Cause of Our Joy

Leticia Velasquez - A Special Mother is Born

2012-01-30T19:10:00.000-05:00

Leticia Velasquez - A Special Mother is Born

2012-01-29T19:08:00.000-05:00

Leticia Velasquez - A Special Mother is Born

2012-01-26T10:08:00.000-05:00

Tebowing in the Latin Rite

2012-01-13T15:18:00.000-05:00

KIDS is co-sponsoring a Conference

2012-01-13T14:52:00.001-05:00

Council on Poor Prenatal Diagnoses

& Therapeutic Intervention

Founding Partners:

Medical Students for Life, Family Research Council,

Keep Infants with Down Syndrome & Jérôme Lejeune Foundation USA

First Annual

Conference on Medical Advances in Prenatal Diagnoses

Saturday, January 21, 8:30 am – 5 pm

Family Research Council, 801 G Street, NW , Washington DC

Presenters include:

Alberto Costa, MD, Ph.D.

Byron Calhoun, MD

John Bruchalski, MD

David Prentice, Ph.D.

Gerard Nadal, Ph.D.

The Conference will bring together professionals from many different specialty areas, including genetic researchers, ob/gyn physicians, developmental pediatricians, hospital nursing staff, medical genetic counselors and medical students. Other invited participants and guests include peer ministry providers, social service support professionals, advocates for persons with disabilities and public policy specialists.

The goals of the Conference are:

· affirm the life and dignity of all persons, especially those diagnosed prenatally with a disability or lethal condition

· review how information about prenatal diagnoses of disability or lethal condition is currently delivered

· consider how this information might be delivered more comprehensively

· consider the impact of a new blood test for Down syndrome in obstetric care

· explain the work of the Council and its year-long engagement on prenatal diagnosis issues

· review best practices for postnatal care of infants with disabilities in perinatal hospice and in hospital, home and medical daycare settings

An agenda for the day will be available soon. Our host for the day, the Family Research Council (FRC), has limited space, so this first Conference is by invitation only. However, FRC will be webcasting all general sessions that day, which can be viewed viawww.frc.org. For more information, contact Jeanne Monahan at Family Research Council, jfm@frc.org ( 202- 225-4008) or Peg Kolm, at mkolm@adw.org (240-994-0603). We welcome your interest and expertise in this effort, and hope you can join us on January 21.

Two reasons I support Karen Santorum for First Lady

2012-01-11T13:56:00.002-05:00

Rick Santorum with Isabella, Leticia and Christina Velasquez

Jennifer Hartline sat down with e Karen Santorum to discuss her family. Karen is an attorney and neo-natal nurse, the author of two books and most of all devoted mother and wife to Rick. In addition to enduring life on the campaign trail the couple has had to endure wretched attacks on their handling of their greatest sorrow, the loss of their son Gabriel from left wing pundits Alan Colmes and Eugene Robinson. But Karen returns mercy for vitriol, because she says, "you never lose with love."

Karen and Rick have a deeply rooted Catholic faith, they homeschool their seven children and attend a Novos Ordo Mass in Latin, and are seen by parishioners in their Virginia parish during the week at daily Mass. Its easy to see where Karen nourished her gentle attitude of returning good for evil. She has a truly Catholic understanding of suffering which has shaped her loving forgiveness. I can't imagine how much pain these unworthy attacks must have caused her, evoking as they must have, the memories of the terrible loss of her son Gabriel. She shares Gabriel's story in a moving book "Letters to Gabriel"

She says, about suffering,
"All you can do is trust Him and embrace the cross you're given, because there's definitely a reason," she'll say. "Crosses come in all shapes and sizes, but we're better because of them. Even in the worst of times God is working and His light will shine through."

Author of "You Never Lose with Love", Jennifer Hartline writes;

"Where our abortion-minded culture sees a "burden", Rick and Karen see Bella -- their beautiful blessing.
"I'm a blessed mother of a special-needs child. Since her birth, I've learned that God truly has a reason for everything. Like every one of us, God has a purpose for her. Bella has made all of us grow in our faith like never before, made us more virtuous and shown us God's love and mercy. Her life is a very happy and joyful life. Bella is an angel. I truly believe I am in the care of a saint."

Now how often do we get the opportunity to vote for the father of a saint for president?

On a personal note, Rick gave permission to reprint his story about Isabella Maria, their daughter who was born with trisomy 18 entitled "Two Years Worth Every Tear" in my book "A Special Mother is Born". This photo was taken at a Town Hall at the home of family values activist and former gubernatorial candidate, Karen Testerman. A month later, last Monday evening, I met Rick and Karen at a rally in Manchester NH. Rick introduced me to Karen as the author of the book. Karen said, "I love your book!". I embraced both of them and we took a photo together (I will post it when I receive it).

Read more by Jennifer Hartline at Catholic Online.

Catholics: join me in a nine Memorare Novena for Rick Santorum today

2012-01-10T12:23:00.001-05:00

Memorare

Remember, O most gracious Virgin Mary, that never was it known that anyone who fled to thy protection, implored thy help, or sought thine intercession was left unaided.Inspired by this confidence, I fly unto thee, O Virgin of virgins, my mother; to thee do I come, before thee I stand, sinful and sorrowful. O Mother of the Word Incarnate, despise not my petitions, but in thy mercy hear and answer me.
Amen.

Last night when I met Rick and Karen and thanked them for their witness to life, I promised I would lead my friends and followers in prayer for him in the New Hampshire primary today.

My interview with the Long Island Catholic

2012-01-06T21:15:00.001-05:00

I told Mary, the journalist, the story of how
"A Special Mother is Born" came to be.
Here's an excerpt;

Velasquez said “A Special Mother is Born,” “my own story of Christina’s birth,” was first published in Faith & Family magazine in spring of 2007. “I received so many letters in response from women who had the same epiphany of being surprised by this powerful joy, this encounter with Jesus in the person of their special needs child, that I knew I was on to something,” she continued. “I began collecting stories from mothers three years ago, and was delighted to meet many courageous faith-filled women.” Reading former Senator Rick Santorum’s story in The Philadelphia Inquirer about his daughter with special needs inspired Velasquez to ask fathers to contribute to the book as well.

You can read it on their website.

Prenatal Down Syndrome Diagnosis Booklets Available Free to Medical Providers

2012-01-06T20:30:00.000-05:00

from PR.com:
Atlanta, GA, December 23, 2011 --(PR.com)-- This week, Canister launched a revamped Lettercase program to distribute free copies of "Understanding a Down Syndrome Diagnosis" to medical providers nationwide. The booklets, authored by Stephanie Meredith, were created with input from representatives of the national medical organizations, including the American Congress of Obstetricians and Gynecologists, the American College of Medical Genetics, and the National Society of Genetic Counselors, and the national Down syndrome organizations.

The booklet contains accurate, up-to-date, and balanced prenatal information about Down syndrome for patients learning about a prenatal diagnosis from their physician. The booklet covers available health and education services, common medical conditions for babies with Down syndrome, information about pregnancy options, and helpful resources about the condition. The booklet also includes a Spanish translation and has been optimized for different reading levels.

Practicing medical providers who are involved in delivering Down syndrome diagnoses are eligible for a free copy of the booklet at http://www.lettercase.org/, and medical facilities may also purchase additional copies as needed. The philanthropic program is funded exclusively by the creators of the booklet, Canister, a small design studio in Atlanta, GA.

Justin Meredith, the owner of Canister, explained, "We created these booklets four years ago to fill a void of resources for expectant parents learning about a Down syndrome diagnosis. Since that time, we have distributed nearly 20,000 booklets and been fortunate enough to receive feedback and assistance from representatives of the national medical and Down syndrome organizations. The medical professionals have always been the keystone of our program, so we've dedicated our professional skill and funding capacity to make this resource available to them."

St Andre Bessette

2012-01-06T11:22:00.002-05:00

Today's saint, St Andre Bessett, lived a couple of towns away from me in the mill town of Mossup CT for a while before he entered religious life. He was frail and moved from job to job as they kept firing him. They considered him a loser, but he built St Joseph's Oratory in Montreal. He didn't have anything to begin with but a dream and a devotion to St Joseph.

Catholic Online says;

Despite financial troubles, Brother Andre never lost faith or devotion. He had started to build a basilicaon the mountain but the Depression had interfered. At ninety-years old he told his co-workers to place a statue of St. Joseph in the unfinished, unroofed basilica. He was so ill he had to be carried up the mountain to see the statue in its new home. Brother Andre died soon after on January 6, and didn't live to see the work on the basilica completed. But in Brother Andre's mind it never would be completed because he always saw more ways to express his devotion and to heal others. As long as he lived, theman who had trouble keeping work for himself, would never have stopped working for God.

His prayers worked thousands of cures for those who came to him in Montreal, however, for us in CT, especially the French Canadian community, he's our hometown saint!

May we like St Andre never let our weakness keep us from doing whatever God is calling us to do for Him.

Read more about St Andre at Catholic Online.

Fourth Annual KIDS Event at March for Life

2012-01-05T14:32:00.000-05:00

We are excited to announce plans for the fourth annual KIDS event at the 2012 March for Life in Washington, DC! Once again, we will be meeting at the headquarters of the National Right to Life Committee, just a few blocks from the start of the March. See details at the end of this note for time and location.

We are honored to have Congresswoman Cathy McMorris Rodgersas our special guest for the third year in a row. Cathy is from the state of Washington and has a 4-year-old son, Cole, with Down syndrome. She is a champion for children with special needs in the U.S. House of Representatives.
Participating in the March for Life is like nothing that can be expressed in words; it just has to be experienced! Seeing and being part of the sea of pro-lifers that swarm up Constitution Avenue is so inspiring. Last year it occurred to me that out of all the thousands and thousands of different organizations, parishes, faith communities, high schools, colleges, and pro-life groups that have a presence at the March, our KIDS group may be one of the only, if not the only, group to represent a class of people who are specifically targeted for abortion--those precious unborn babies with Down syndrome.
Now that the new prenatal maternal blood test, MaterniT21, is out on the market, making it even easier to detect Down syndrome earlier in pregnancy, it is even more important for families (and friends) of children with Down syndrome to come together and have a presence at the March for Life, to show the world what a blessing our children (young and adult) are. Please, please, come if you are able! It can be overwhelming to think about driving or taking the Metro into DC with your children, but really, I think sometimes the anticipation of doing it is more overwhelming than actually doing it. If your children are not up walking the entire March, you can do just part of it. But we would so love to see you at the KIDS event!

Here are the details:
Date: Monday, January 23rd
Time: 10:30 - Noon
Location: National Right to Life Committee, 512 10th Avenue, NW, Washington, DC

Special Guest: Congresswoman Cathy McMorris Rodgers, who will arrive at 11:00 a.m.

The National Right to Life Committee generously invites us to use space in their offices and also provides sandwiches and refreshments. So you can have a nice lunch to give you energy for the March! Thank you NRLC!

Please spread the word to anyone you know who has a family member with Down syndrome, or anyone who has a heart for individuals with Down syndrome. If there is another Down syndrome group who will be participating, we invite them to join us. We hope to see you in a few weeks! (It would be helpful to let us know if you are coming, just so we can get an estimate of how many to expect. Also, we would like to give more details (cell phone numbers, parking directions, etc.))

Eileen and Leticia

http://keepinfantswithdownsyndrome.blogspot.com/

Here's my post from last year's event.

Our Lady of Perpetual Help by Justin Stroh

2011-12-29T22:19:00.000-05:00

Got a wonderful Catholic mom in your life?

2011-12-20T09:59:00.000-05:00

Encourage her this Christmas by giving her this inspiring, upbeat book by Dorothy Pilarski;
Motherhood Matters.

See my review here.

Think twice about dropping your donation into that Salvation Army kettle!

2011-12-19T17:03:00.002-05:00

As a social worker in the eighties, I worked extensively with the Salvation Army, so I had a positive image of their good works, and regularly donated to their kettle campaign each Christmas. This all changed this week when Anita Crane, a reporter for World Net Daily sent me the Salvation Army's policy on abortion. It has loopholes which are unacceptable, too many babies fall through.

"The Salvation Army believes in the sanctity of human life. Humankind was created in the image of God (Genesis 1:27). All people – without exception – are of value to him, holding a special place in his creation (Psalm 8:5), irrespective of age, gender, race, religion, health or social status, or their potential for achievement."
But it also states, "A serious commitment to the protection and care of the unborn calls us to a commitment to the prevention of unwanted pregnancy through means such as access to reliable birth control, safety in relationships, and societal respect of women."
Specifically, it says the Salvation Army "believes that termination [abortion] can occur only when carrying the pregnancy further seriously threatens the life of the mother; or reliable diagnostic procedures have identified a foetal abnormality considered incompatible with survival for more than a very brief post natal period."

My reaction is contained within the article, but here is the long version:
As a peer minister to women facing a pre-natal diagnosis of Down syndrome, I have heard the horror stories of what the doctors tell women in order to convince them to abort their child. They are told their child will do nothing to help himself, will only live to 10 years of age, will be miserable, will make their siblings miserable, will never be able to tie her shoes, read, graduate high school, and ruin her parents' marriage. This information is patently false.

The truth is marriages last longer when a couple has a child with Down syndrome,according to this Vanderbuilt University Study, and more are graduating high school and college every day, thanks to inclusive education. No one can say how long a child will live based on information gathered pre-natally or what their IQ will be, and Dr Brian Skotko has just published the results of a survey in the American Journal of Medical Genetics saying how happy families who have a member with Down syndrome are.

I shared this in my article for the National Catholic Register;
“We mailed surveys to families around the country, and 3,150 mothers, fathers, brothers, sisters and people with Down syndrome responded. Here is just a sample of what we found:
• 99% of people with Down syndrome said they were happy with their lives;
• 97% of people with Down syndrome liked who they are;
• 99% of parents said they love their child with Down syndrome;
• 5% of parents felt embarrassed by their child;
• 97% of brothers/sisters, ages 9-11, said they love their sibling.”
Now, some would interpret Down syndrome in the definition given by the Salvation Army policy statement as "a foetal abnormality considered incompatible with survival for more than a very brief post natal period."

Some babies with Down syndrome do not live long. Some live for decades, outliving their parents.

Take another 'abnormality' trisomy 18. Most babies with t18 don't live to birth, that is true, but there are exceptions. Tell that to Rick Santorum whose three year old Bella Maria is still with us, and Mary Kellett of Pre-natal Partners for Life whose son Peter was a blessing to his family and the world till his recent death at 6 and 1/2 years.
So, if Salvation Army says abortion is OK for babies with abnormalities, most women facing such a diagnosis will be told by their health care professional that that includes them.

It is beneath the dignity of a Christian organization to allow innocent unborn children to be killed. It is beneath the God-given dignity of the babies to be told their lives can be cut short because their mother was raped (the other exception) or they are not perfect enough. If God only gives them life while in their mother's womb, who are we to cut it even shorter?

It is the position of KIDS Keep Infants with Down Syndrome that possessing an abnormal prenatal diagnosis does NOT lower the God-given dignity of a baby. We believe that all human life is sacred from conception till natural death, and if, in the tragic circumstance that a baby is destined to live only the briefest of times, only within a mother's womb or a few brief moments or days afterward, that we must give that child the full span of life and not end her life by abortion.

There is always the possibility of an incorrect diagnosis, so we must always decide on the side of life, and trust God with the life of our beloved child.
The Salvation Army should re-consider their position on this critical issue, as it is not consistent with a pro-life stance.
Let them live, Salvation Army. Let the babies live.

Support their moms if they feel that they can't do it alone, and give them hope for their child's future, if not here on earth, forever in eternity.
That is what we celebrate with the birth of the Christ Child, the birth of the giver of Eternal Life.

Send Salvation Army a message that you will not be donating until they revoke the loopholes in their abortion policy using this contact information:
Commissioner M. Christine MacMillan
The Salvation Army
International Social Justice Commission221 East 52nd Street
New York, NY 10022, USA
Phone: (212) 758-0763Email: IHQ-ISJC@salvationarmy.org

Read the entire article here.

Watch my talk tomorrow live at Family Resource Council

2011-12-13T20:42:00.000-05:00

Follow this link to the live webcast at 12 noon EST. Please pray for me as I discuss Down syndrome; Disaster or Divine Smile?

Museum of Motherhood Talk on "Genetic Diversity"

2011-12-07T16:59:00.000-05:00

The talk where I introduced my concept of "genetic diversity" to a conference on multicultural motherhood, given Monday at the Museum of Motherhood in Manhattan was well received. Attendees were very enthusiastic about the idea of a new paradigm of perfection, one not based on flawlessness, but on wholeness, of fulfilling one's purpose in life, as introduced by Amy Julia Becker at her keynote address for the Down Syndrome Conference at Princeton University.
You can see my chatty talk here.

Upcoming talk at the Family Research Council

2011-12-07T16:30:00.000-05:00

If you are in the Washington DC area, and would like to increase your awareness of the gifts offered by those with Down syndrome, please consider registering for a talk that I will be giving with Mark Bradford, Executive Vice President of the National Catholic Bioethics Center.
We will address the new pre-natal test, MaterniT21 which is now available to expectant mothers and how it has the potential to eliminate people with Down syndrome from our society. Mr Bradford works with the Jerome Lejeune Foundation which supports promising research projects around the world seeking to improve the learning and memory of those with Down syndrome.
We will share our personal testimonies as parents of children with Down syndrome, and why there's never been a better time in history to have a child with Down syndrome.

Click here to register for the free event, held at the Family Research Council.

I will be speaking at the Museum of Motherhood in NYC tomorrow

2011-12-04T15:38:00.002-05:00

Multicultural Motherhood
Day Conference
Dec. 5th 9-4:30
Museum Of Motherhood
401 East 84th St. NYC 10028
212.452.9816
Admission $55 pre-event l $74 day of conference
BUY CONFERENCE ADMISSION NOW

9:00-9:10 Museum Tour
9:10-9:30 Joy Rose: MotherhoodFoundation@gmail.com - Multicultural Motherhood through a magnifying glass – Incorporating tolerance and traditions through family & community experiences. Joy is the Founder and Executive Director of Museum Of Motherhood. Opening remarks, museum tour and presentation on the mission and context of the Museum Of Motherhood located in New York City, USA. As a Christian, married to a Jew and practicing Buddhism in the home, Joy's direct experience blending family traditions recognizes the unifying force is our connection to our humanity. Understanding, accepting and celebrating our differences will lead us into the future. The Museum Of Motherhood is a sacred space for birthers and caregivers, managing information in a local, community and global context. She is President and Founder of Mamapalooza Inc., a company by women, promoting mothers for social, cultural and economic benefit. Inspired by her experiences as a wife and mother in the arts, Joy is dedicated to championing opportunities for Mom-Artists, Educators and Entrepreneurs.
9:30-9:50 taraneh.shirazian@mssm.edu - Global Motherhood Presents, Saving Mothers. Saving Mothers is a 501(c)3 organization dedicated to women's health, education and empowerment. Through public health initiatives, we aim to give women and their health care providers the tools they need to reduce maternal mortality and morbidity,

10 Minute Open Discussion

10-10:20 Rachel Ishofsky: rachel@jhafrica.org - Jewish Heart for Africa. Rachel Ishofsky is the Associate Executive Director of Jewish Heart for Africa, a non-profit organization that brings sustainable Israeli technologies to rural African villages. While studying art and literature at New York University, Rachel took some time to study and teach in West Africa, where she founded a small non-profit for street children. After graduating summa cum laude with a B.A. in individualized study, she decided not to get her PhD as planned, and traveled the world instead, before returning to her native New York and joining the Jewish Heart for Africa team. Rachel has worked with various non-profits promoting the arts, education, and human rights. She speaks Hebrew and Spanish, has taught English on three continents and has traveled to over 30 countries. Rachel will be speaking about the challenges facing rural African mothers, from the unavailability of healthcare and maternity services at night without electricity, to the problem of not having vaccines to give to their children, to walking for hours to provide water for their families. She will also be speaking about the solutions to these challenges to be found in sustainable technologies.
10 Minute Open Discussion & Bathroom Break
10:30-10:50 Clare Misquitta: editor@brightsideglobaltrade.com: Healthcare For Multicultural Moms. Where are the resources for Multicultural Moms? Many multicultural moms don't get the care they need because of health disparities relating to ethnicity and race that are often ignored. Clare will share with you the facts and show you where you can find healthcare resources in America and Globally . Learn about healthcare disparities and join the movement to spread the word and help other multicultural moms. This session is devoted to my mom who passed away in 2000 in search of cancer cure. Clare has worked with the Museum of Motherhood since 2009 and is proud to speak at the Multicultural Mom event. She is a healthcare writer and her primary goal is to inspire the business community to build a sustainable world. She has traveled, worked and spoken across the Globe and has helped many leading pharmaceutical companies to build free educative healthcare programs for patients and the healthcare community. Her multicultural expertise extends to the African American, Asian (Indian, Pakistani, Chinese, Filipino, Vietnamese, Malay, Laotian and Hmog), European and Canadian community.
10 Minute Open Discussion
11-11:20 Tanya Fields - Tanyadenisefields@gmail.com - the BLK ProjeK; Inspired by her experiences as a single working mother in a marginalized community Executive Director Tanya Fields created and founded the BLK ProjeK in 2009.Tanya used her experiences as an underserved, low income woman and mother to inform and enrich the work of several high profile local environmental organizations such Mothers on the Move, Sustainable South Bronx and Majora Carter Group. Tanya utilized her network, resources and knowledge to create the BLK Projek. The BLK ProjeK seeks to create economic development opportunities that address food justice, environmental justice and public and mental health issues. By empowering underserved women of color through political education, beautification of community spaces, urban farming and holistic health programming, by creating equal access to these enriching experiences for under-served women of color, we strengthen and empower our entire society.
10 Minute Open Discussion
11:30-11:50 Leticia Velasquez; marysjoys@yahoo.com - Adopting a New Paradigm of Cultural Diversity; How genetic diversity compliments cultural diversity. Leticia is the author of A Special Mother is Born an inspirational collection of stories from 34 parents of special needs children, and is a contributor to Encyclopedia of Catholic Social Thought, and the award-winning Stories for the Homeschool Heart. She writes three blogs: Catholic Media Review, Cause of Our Joy and the award-winning Causa Nostrae Laetitiae. She posts on Down syndrome for Ehealth and Wellsphere. She is a correspondent for the National Catholic Register, a contributor to MercatorNet, Mamazina, Catholic Online, and a columnist for Catholic Mom. In 2008 Leticia co-founded KIDS (Keep Infants with Down Syndrome) to raise awareness of the unique gifts of people with Down syndrome to society. She has appeared on EWTN, and Canadian Television program "The Arena", and on various radio shows including NPR, The Drew Mariani Show, The Day Gardner Show, and Health Matters. She, her husband, and their four daughters live in rural Connecticut. Book signing to follow.
12- 12:50 LUNCH BREAK – Sponsored by The Food Emporium, Upper East Side

1:00-1:40 Dr. Phyllis Chesler, Mothers On Trial; PChesler@phyllis-chesler.com - Phyllis Chesler is an Emerita Professor of Psychology and Women’s Studies at City University of New York. She is an author, psychotherapist and an expert courtroom witness, with classics like Women and Madness, Women's Inhumanity to Woman, the 25th anniversary edition of Mothers On Trial, and so many more. She has lectured and organized political, legal, religious and human rights campaigns in the United States and in Canada, Europe, the Middle East and the Far East. A popular guest on campuses and in national and international print, television, radio and online media, she has been an expert commentator on the major events of our time. She has lived in Kabul, Afghanistan, and in Jerusalem and Tel Aviv. She currently resides in Manhattan. Dr. Chesler is co-founder of the still ongoing Association for Women in Psychology (1969) and the National Women’s Health Network (1974), and is a charter member of the Women’s Forum (1973-74). She is a charter member of the Veteran Feminists of America, a founder and Board member of the International Committee for the Women of the Wall (1989), as well as an affiliated Professor with Haifa and Bar Ilan Universities.

3:30-4:00 Elizabeth Mangum-Sarach, Director of Birthfocus: Birthfocus@gmail.com, presenting on Nomadic Motherhood (Short Film). Elizabeth Mangum-Sarach is the Director of BirthFocus, LLC, a Licensed Clinical Social Worker, a Lamaze Certified Childbirth Educator, a Birth Doula Trainer through Dona International, a Labor Support Doula, and, in September 2011, she will be certified as New York City's first Fear to Freedom Facilitator! She has worked as a DONA certified labor support doula since 2004. She is the former Director of Maternal Health and Parenting Services at Inwood House, a non-profit that offers services to pregnant and parenting teens, and is responsible for developing their doula and childbirth education programs. She is an approved DONA International Birth Doula Trainer and offers trainings in NYC and internationally.

White Ribbon Alliance - (Short Film)

Conference Co-Coordinator Janae Seignious- Shields: JShields@goodwillny.org - Janae has a Bachelor of Arts with a Major in U.S. history from the State University of New York at Oswego and a Master’s of Social Work from Monmouth University with a concentration in International and Community Development. She is a Class III Green for All Fellow. In 2011, Janae completed the NYC Department of Youth and Community Development Family Development Credential for leaders. Since 2006 she has been working at Goodwill Industries in the Workforce Development Division. Janae co-wrote the proposal that secured funding to start a program to help single mothers become self reliant and empowered. Currently, she facilitates a monthly support group for single mothers. She continues to secure funding and donations to support programming for single mothers at Goodwill. She serves on committees that evaluate Welfare to Work Programs. She is a certified Occupational Safety and Health 10 and 30 hour General Industry Trainer. She also teaches the Roots of Success Environmental Literacy Curriculum to people on and applying for public assistance to introduce them to green career opportunities and environmental justice issues facing people in their communities. She develops training programs and strategic plans to continuously improve quality and efficiency of Goodwill’s Workforce Development programs. She also sits on the Advisory Board for Samuel Gomper’s Career and Technical Education High School in the Bronx, NY. Janae has a commitment to developing programs and services to help strengthen families and address issues of urban poverty, workforce development and environmental justice.
Visit The Museum; 401 East 84th St. (1st Ave.) NYC
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Joy Rose, Executive Director
212.452.9816
Motherhood Foundation Inc. (MFI)
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Honoring the Legacy of Mothers In Perpetuity

We are the first and only facility of its kind. The Museum Of Motherhood serves as a valuable resource for everyone including those who wish to honor mother-work and those who wish to study the cultural family, from lay-people, to school children to serious scholars. As an organization devoted to educating the world about the contributions of mothers both historically and in contemporary culture, we intend to fill a longstanding void by focusing on the many roles of mothers throughout history with our physical and virtual library, exhibit facility, traveling productions, and resource center. We honor the many unsung heroes as well as the famous and great and share the remarkable stories of how birthers & caregivers cope, inspire and prevail. There are all types of mothers here: stepmothers, adoptive mothers, activist mothers, mother artists, single mothers, divorced mothers and mothers who successfully navigated married life. The Museum of Motherhood is the house that is home to their legacy.

World AIDS Day and Down syndrome; where is the cure?

2011-12-02T10:19:00.006-05:00

One of my pet peeves was brought to mind by World AIDS Day. Not that I oppose finding a cure for HIV.
I was a social worker when AIDS emerged in the eighties. I helped a young man with HIV who was kicked out of the loft in Greenwich Village which he had shared with his lover, and was now living miles from a payphone in the country where he slowly died of AIDS.No one was with him. He covered his mouth in my office, and treated himself as a pariah, asking me to touch the doorknobs for him, since no one knew how AIDS was transmitted. My heart broke with compassion for him, abandoned to die alone. There was very little I could do besides make him comfortable and keep him company in 1985.
In a little over three decades, we discovered AIDS existed, raised money for research, and found treatments. Now its effectively cured, if only we would admit that it is spread by immoral sexual activity, we could have it under control. I am happy for those who are benefiting. Too bad that young man is not among them.

In 1958 Dr Jerome Lejeune discovered trisomy 21, the cause of Down syndrome. We should have rejoiced that a cure was now possible, and as with AIDS, banded together to raise funds. However, rather than joining him in his efforts to find a cure, which Dr Lejeune described as "taking less effort than sending a man to the moon" (which, by the way was done since T21 was discovered) the March of Dimes spent its millions developing a search-and-destroy methods of prenatal diagnosis, using Dr Lejeune's discovery to find unborn babies with Down syndrome. This led to an abortion rate of 92% for such babies. Some cure. Dr Lejeune watched this happen and dedicated his life to finding a cure, he said, 'I see only one way left to save them, and that is to cure them. The task is immense--but so is Hope."

Did we kill AIDS patients as a means to a cure?
Or cancer patients?

Dr Lejeune said, "Medicine becomes mad science when it attacks the patient instead of fighting the disease. We must always be on the patient's side, always."

Why was pre-natal diagnosis and abortion for nearly 50 years considered the end of the Down syndrome story? Sure, its a complicated disease, but so is HIV. I have to think that AIDS patients being movie stars like Rock Hudson had a lot to do with the dedication and speed with which we found a cure. There are 2.7 million afflicted with HIV in the USA and nearly half a million who have trisomy 21, or 20% of that number. That is still a significant population, yet there were no huge TV specials, no ribbon on the White House, or until recently, no big Hollywood celebrities sponsoring efforts to raise money for Down syndrome research. Instead, researchers like Dr Alberto Costa have to give of their own money to search for a cure for his daughter's Down syndrome.
Like Dr Costa, I have a daughter with Down syndrome. She is no Hollywood celebrity, but don't try to tell her that. Her smile and her can-do attitude brighten her elementary school. I volunteer full time to raise awareness of the inequity with which people with trisomy 21 are treated. No, not in education, thanks to the Americans with Disabilities Act, she can go to typical school right through college. But in research.
And in the way it is considered standard medical practice that a woman expecting a child with Down syndrome gets no more than a phone number for an abortion clinic instead of information about how good life is for those with Down syndrome. Thanks to Dr Brian Skotko, whose new survey in the American Journal of Medical Genetics, brings out the fact that 99% of families are happy with their child with Down syndrome, and that the people with T21 are just as pleased with their liives. This is not what expectant women have been hearing. My friends have been told they were selfish for wanting to give birth to their child with Down syndrome, bringing misery upon themselves and their families. Its simply not true. And I am working through KIDS (Keep Infants with Down Syndrome) to change how the diagnosis is treated, especially since with the new diagnostic test, MaterniT21, the diagnosis will be offered more widely and earlier. Doctors will have results at 12 weeks instead of 22, giving women plenty of time to educate themselves about what life is really going to be like for their child with Down syndrome before making a decision to abort.

I want people like Christina to find the compassion, resources, and acceptance which is now offered to AIDS patients. Why shouldn't she be treated with equal dignity?
Things are changing. Three years ago, the National Institute of Health formulated a research plan to find a cure for the cognitive delays of Down syndrome, and is now forming a consortium of parents and researchers. The legacy of Dr Lejeune lives on in newly formed Lejeune USA which had a major meeting at the Neuroscience Convention last month in DC (more about that meeting in future posts). UC San Diego Down syndrome researcher Dr William Mobley said, "if you told me a decade ago, I would be discussing clinical trials for a drug to treat Down syndrome cognitive delays, with four laboratories, I would not have believed it".
I was heartened by the star-studded fundraiser "Be Beautiful, Be Yourself" offered by the Linda Crnic Institute for Down Syndrome in Washington last month at $500 a plate. Gladys Knight was there and so was my Congressman. We don't want people with Down syndrome to go away, but there is bright promise that within a decade, the significant delays in memory and learning which my daughter endures, may be, like AIDS, on the way to the dustbin of history.

Flashes of Color; a great film about disabilities

2011-11-27T13:14:00.000-05:00

Rick Santorum Bares His Soul About Bella.wmv

2011-11-22T19:47:00.000-05:00

La FNDLE au quotidien: French community of young men with Down syndrome

2011-11-20T16:25:00.000-05:00

Shifting Perspectives at the Dublin Arts Council

2011-11-17T19:02:00.000-05:00

Understanding the Special Olympics

2011-11-16T20:25:00.000-05:00

Great review up by Dr Gerard Nadal

2011-11-08T20:04:00.000-05:00

My friend Dr Gerry Nadal has a great review of "A Special Mother is Born" at National Right to Life News.

Here we are sharing lunch in New York after my interview Friday with Michael Coren on "The Arena" which was filmed in the Time Warner Center in Columbus Circle.

Not only is Gerry a great scientist, he is a powerful writer, spellbinding speaker, and a humble, faithful Catholic dad and husband.
I am fortunate to call him my friend.
His review is up at Life Site News, and Life News as well as his popular blog Coming Home.

Preparing to tape "The Arena" in CNN studios.

My first customer review is up at Amazon

2011-11-04T18:33:00.000-04:00

You can read it here.

My book is available at the WestBow Press bookstore

2011-11-03T19:54:00.002-04:00

You can go here to order it directly from WestBow Press.

$16,000 Tax Funded 30 Wk Down Syndrome Abortion

2011-11-01T10:02:00.000-04:00

Catholics celebrate All Hallow's Eve

2011-10-29T10:37:00.002-04:00

As a Catholic I find Halloween, at least the way I celebrate it, with a Vigil Mass for the Feast of All Saints, and with my children dressed in costumes depicting saints, to be a very Christian celebration of the Resurrection of the Dead and the Body of Christ, the Church.
Also in the Catholic version of the Scriptures we have the book of Maccabees which affirms the Catholic practice of praying for the souls of the dead who are suffering in Purgatory. All Saints Day and the followig Feast of All Souls Day are focused on remembering that our goal is Heaven, and we have to pray for those who have gone before us to reach their Heavenly Home. We celebrate that fact by dressing as our heroes the saints who have gone to their reward in a blaze of glory. Saints are Catholic superheroes.
In these photos, Christina is dressed as St Margaret of Scotland, a queen who brought a Christian civilizing influence to her Scottish husband, King Malcolm's court, and who was known for her charity.

"II Maccabees 12:43-46:
"And making a gathering, he [Judas] sent twelve thousand drachms of silver to Jerusalem for sacrifice to be offered for the sins of the dead, thinking well and religiously concerning the resurrection, (For if he had not hoped that they that were slain should rise again, it would have seemed superfluous and vain to pray for the dead,) And because he considered that they who had fallen asleep with godliness, had great grace laid up for them. It is therefore a holy and wholesome thought to pray for the dead, that they may be loosed from sins."
Here's a montage of our celebration of All Hallow's Eve.

Down Syndrome Kid Inspires With "I Survived Abortion" Sign | LifeNews.com

2011-10-27T09:27:00.001-04:00

Down Syndrome Kid Inspires With "I Survived Abortion" Sign | LifeNews.com

This photo has been going viral around Facebook, spreading the message that less than 10% of babies diagnosed with Down syndrome make it to birth.

Keep it going, till these wonderful gifts of God are allowed to be born and grace the world with their gifts.
Read Kurt Kondrich's latest piece about the inalienable right to life of those with Down syndrome in Renew America.
AND pass it on!

Congressional Down Syndrome Caucus Webinar on this link

2011-10-25T15:58:00.004-04:00

Here are the recordings of the Down syndrome conference yesterday on Capitol Hill hosted by the Congressional Down Syndrome Caucus.

http://www.ustream.tv/recorded/18108788
and
http://www.ustream.tv/recorded/18109283

Thoughts on bearing fruit, and loss of loved ones

2011-10-23T18:45:00.003-04:00

From the blog of my friend Dr Gerard Nadal, Coming Home
Note: It’s been two weeks like no other. Yesterday we had the funeral mass and burial of Jon in Warwick, NY. We also had the memorial for Kortney and Sophy in Virginia.

Today, on the Lord’s Day, we rest.

Tomorrow, all will return to our lives and a new normal, a phase of healing and living the rest of our lives marked indelibly by the searing events of the past two weeks. As we keep the Blythe, Gordon, and Scharfenberger families in our prayers.

Here’s Deacon Kandra:

By a happy coincidence, this gospel touches on a theme that was so vital to Pope John Paul. In the parable, a tree is given one more chance to bring forth good fruit. The gardener gives it that chance; he offers it the gift of mercy. John Paul, you’ll remember, was beatified on the Feast of Divine Mercy. In fact, the opening prayer for this mass begins, “Oh God, who are rich in mercy…”

My take on loss and bearing good fruit

Today we bid farewell to Sr John Baptist SCRC, a beautiful nun who was only 50 years old of cancer, and dozens of people have come to her beside to pray one last time with Sister whose tender blue eyes and ever-present smile reflected Heaven.

My 14 year old daughter Bella was musing on what a shame is was that good people like Jon, Kortney and Sr John Baptist go home so young. We were peeling apples for a pie at the kitchen table. Suddenly she picked up an apple and said with a smile, “God always picks the ripe apples!”

Jon, Kortney and Sr John Baptist have accomplished their purpose in this life. No, we’re not satisfied, we wanted Jon to save more babies, either marry or go into the priesthood, and we know Benjamin Gordon wanted to raise his unborn daughter Sofy with his new wife Kortney.

We wanted Sr John Baptist to beam her radiant smile at us, take our hands, as she always did, and reassure us that “this too will pass” as we mourn her death.

But these three have accomplished their life’s mission, sanctity. This is our mission as well, we are all called to be saints, these three were ‘ripe’ in that they were already full of God’s grace and love, and ready to go home. That is why the pain felt at their loss is so keen. The loss of their sweetness seems unbearable and unjust.

We mustn’t begrudge God His excellent taste in wanting to pick the ripe apples. After all, they drew their sweetness from Him.

Celebrate the Feast of Blessed John Paul II with a new DVD series

2011-10-22T08:25:00.002-04:00

Review of John Paul II; The Man, The Pope, and His Message

By Alberto Michelini

Leticia Velasquez

Catholic Media Review.

Volume 8 I Am Your Voice: The Pope on Human Rights

Catholics have long enjoyed the work of papal videographer, Alberto Michelini. Now under a special arrangement with the Vatican, what was formerly available on video has been converted to a four DVD set containing five hours of dramatic documentary footage, organized by topic into ten 30 minute films. Each film focuses on a different aspect of the pontificate of Blessed John Paul; including youth, children, the poor, the family, Marian devotion, historic events, a day in the papal apartments, and the working world. The series is available in English, French, and Spanish. The companion website wwwjohpaulseries.com for this DVD set has free downloads of companion discussion guides for leaders and participants for each volume with tools for group discussion. This makes this series an ideal tool for teachers to use in Catholic school, CCD, and parish adult ed programs. Study groups could use these films in private homes. Homeschooling mothers from the JPII Generation will find this ideal for teaching their children about the legacy of Blessed John Paul.

Volume 8 “I Am Your Voice” is the powerful film on human rights; Pope John Paul is seen interacting with and addressing poor, sick and persecuted people from every corner of the globe. A heartbreaking cry of misery is documented in this film; from the slums of Latin America and Calcutta, the prairies of Canada, the plazas of South Korea, the Australian Outback, the savannahs of Africa, and the shipyards of Gdansk. The desperation of the members of the human family who are callously denied basic human dignity are heard by the man who himself suffered under two oppressive regimes. South Americans who are living forsaken in squalid slums while neighbors enjoy luxury, occupying land was stolen from them. African lepers whom the government has forgotten, living in filth, workers who are deprived of just wages and political freedom, aboriginal tribes whose numbers are decimated yet remain proud of their culture. The Pope listens to their pleas with love and tells them “The Church hears your voice”

He responds to such pain with tears of compassion, embracing the disconsolate and dying, and railing with righteous indignation at the perpetrators of injustice at the rich who ignore the hunger of the poor, and the violence between protesters and police in Chile while he shouts to the multitude, “Love is stronger, Love is stronger!” John Paul speaks unflinchingly in defense of human rights at the United Nations in 1979, attempting to awaken the powerful of the world from the somnolence of egotism. He prays with profound sorrow at the grave of murdered Polish priest and Solidarity activist Fr Jerzy Popieluszko. Not taking sides for political purposes, as he is often accused of doing, the Pope is consistently on the side of the downtrodden, pointing out that the Church cannot be silent when human dignity is at stake.

During this moving footage, the narrator adds context to the scenes, and quotes from John Paul’s numerous encyclicals dealing with social justice; allowing viewers to grow in understanding of the Church’s position on human rights issues, as a preferential option for the poor, while avoiding the errors of Liberation Theology. He says that Christ came that we might have life abundantly, yet does not favor one political solution over another, rather, he attempts to stir the consciences of those in charge of the world’s economic systems, both left and right. For this he receives criticism for “dabbling in politics”.

Today there are protests of increasing intensity around the world, expressing frustration with injustices both political and economic. The Holy Father addressed this in his speech at the United Nations in 1979 when he said, “wars develop when inalienable rights are violated.” His warning was fulfilling the prophetic duty of the Church, to be the voice of the oppressed. He exclaims “the Church cannot be silent when human dignity is at stake”. One of the most emotionally charged moments of this documentary is when John Paul II upbraids his fellow Poles in 1991 in Kielce when he reminds them, shortly after the Solidarity Movement brought freedom to those behind the Iron Curtain and there was a movement to tell the Church to get out of politics with regard to abortion. He reminded his countrymen that a child is a gift from God.

No human being is forgotten in John Paul’s passionate defense of the dignity of mankind from birth to natural death. These films are compellingly narrated using the best of John Paul II’s encyclicals to educate the public about why Pope John Paul is called the Great and why millions attended his funeral shouting “Santo Subito!”

Don’t miss this outstanding series which offers an unparalleled opportunity to relive this extraordinary pontificate, and grow in your appreciation of the historical legacy of soon to be St John Paul.

In the spirit of the Gospel as well as out selfless Pope, It is “better to give than to receive”, CCC of AMERICA is hosting a contest: JPII They Love You. People who go to the Pope Series website to complete a brief web form in order to enter someone of their choosing to win a DVD set (valued at $49.99). They will have only 50 words or less to say why they are entering that particular friend, relative, neighbor, CCD teacher, Priest, etc to win a copy of the series.

More information may be found at this website; wwwjohpaulseries.com

A little Down syndrome beauty

2011-10-22T07:48:00.000-04:00

I just discovered a stunning blogspot from a German photographer, Connie Wenk, who like me, finds the beauty of those with T21 absolutely irresistible!
Its called That Little Extra, and they have a calendar!

I will be calling in on the Health Matters radio show with Dr Delgado

2011-10-20T14:31:00.002-04:00

"Health Matters" with Dr. George Delgado M.D., F.A.A.F.P. of Culture of Life Family Services (COLF's) (every 3rd Thursday)

Join Dr Delgado every third Thursday as he discusses health issues from a Catholic pro-life perspective. During the program, please call in with your health questions: 760 931 1604 and Dr Delgado will address them. Every Third Thursday, the doctor is in.

Dr. George Delgado is the medical director of Culture of Life Family Health Care. He practices family medicine, providing medical care that is faithful to the teachings of the Catholic Church for newborns, children and adults. Dr. Delgado is an NFP Medical Consultant trained in NaProTechnology. Additionally, he and the other members of the staff are available to counsel women who are in crisis pregnancies. Dr. Delgado received his medical degree from the University of California, Davis and completed his residency at Santa Monica Hospital/UCLA. He is board certified in family medicine and in hospice and palliative medicine. Dr. Delgado is a Voluntary Associate Clinical Professor at UCSD School of Medicine.

Please call in tonight between 6 and 7PM Pacific Time with your questions and comments. Dr Delgado is discussing pre-natal testing and raising a child with special needs. The number is 760-931-1604

MaterniT21 threatens to extinguish the Down syndrome population

2011-10-19T13:47:00.000-04:00

This is the point of view I explore in my article in the National Catholic Register on this new prenatal screening test for Down syndrome which was released this week.

Punky a cartoon with an exceptional star

2011-10-14T09:22:00.000-04:00

Pre-orders for my book "A Special Mother is Born" are now being accepted!

2011-10-10T12:49:00.001-04:00

Great news for those of you who have been wondering when the books will be available!
WestBow Press has informed me that my books are coming within three weeks!

I am taking pre-orders here on my blog, as well as on my other blogs, Causa Nostrae Laetitiae, Keep Infants with Down Syndrome, and Catholic Media Review.

Just click the paypal button in the margin on the right, leave your shipping information and your payment of $22.50 ($19.95 plus $2.55 shipping for a total of $22.50) by credit or debit and I will ship your book to your home in one month.

The Jerome Lejeune Foundation

2011-09-29T15:25:00.000-04:00

Many of my readers have heard me praise the good work of the Jerome Lejeune Foundation which has a clinic in France which treats people with Down syndrome and funds ethical research projects worldwide to improve the cognition of those with Down syndrome.
If you haven't then you can read my articles about the Foundation here and about Dr Lejeune himself from his daughter here. I wrote the entry on Jerome Lejeune for the Encyclopedia of Catholic Social Thought which will be published next year. We owe so much to this valiant man who is also a candidate for sainthood.
I would like to ask my readers to LIKE the Jerome Lejeune Foundation on Facebook to show your support for the pro-life legacy of Dr Lejeune.

Health Matters: Down Syndrome

2011-09-29T14:24:00.000-04:00

The book cover is in!

2011-09-21T19:03:00.000-04:00

To keep up with the progress of the book, and for information on where to order it when it becomes available, see the book blog A Special Mother is Born.

New survey says life with Down syndrome is good; so why the 92% abortion rate?

2011-09-21T11:46:00.000-04:00

We who love someone with Down syndrome know this. Life is good. Challenges abound, but the rewards are greater, and far outweigh the sacrifices. When I feel those soft little arms tight around my neck, I forget how long it takes her to get dressed, eat dinner, and walk into school. My heart melts and I am thankful God chose me to raise a child like Christina.
But the common perception is that the difficulties outpace the joys, or there wouldn't be a 92% abortion rate. Thank you Dr Brian Skotko of Children's Medical Center, Boston, for compiling this data which proves that the public perception of life with Down syndrome is wrong. Now we who love these special people need to bring this survey out of hiding into the public eye, to help change hearts. To save lives.

Leticia & Christina photo by Shana Sureck

Share this post on Facebook and Twitter by clicking the Share button on the bottom of the post. Discuss it at your next school meeting, coffee house visit, over the fence chat or TV spot. Write about it to the editor of your local newspaper, or call into radio shows discussing disabilities. Get the good news out, and we'll see fewer abortions of these lovely individuals who have so much to offer our society.

BOSTON, Sept. 21, 2011 /PRNewswire via COMTEX/ -- Survey results may inform decisions about prenatal testing

Three related surveys led by a physician at Children's Hospital Boston suggest that the experience of Down syndrome is a positive one for most parents, siblings and people with Down syndrome themselves. The results, published in three reports in the October issue of the American Journal of Medical Genetics, may serve to inform expectant parents and clinicians providing prenatal care.

"New prenatal tests for Down syndrome are set to come out as early as the end of this year," says Brian Skotko, MD, MPP, a clinical fellow in genetics at Children's Hospital Boston. "Many more women will then learn about the diagnosis prenatally and will need to grapple with very personal pregnancy options. In previous surveys, mothers have reported receiving inaccurate, incomplete and occasionally offensive information about Down syndrome from their healthcare providers."

Skotko and collaborators Susan Levine, MA, CSW, of Family Resource Associates (Shrewsbury, NJ) and Richard Goldstein, MD, of the Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, sent surveys to 4,924 households on the mailing lists of six nonprofit Down syndrome organizations around the country. The surveys asked respondents to rate their agreement with statements on a scale of 1-7, and also included some open-ended questions.

The first study evaluated surveys from 2,044 parents or guardians, representing an estimated response rate of 29 percent. Its findings:

99 percent of parent/guardians said they loved their child with Down syndrome

79 percent felt their outlook on life was more positive because of their child

5 percent felt embarrassed by their child

4 percent regretted having their child.

The second study evaluated responses to similar questions from 822 brothers and sisters age 9 and older (estimated response rate, 19 percent). Of the siblings age 12 and older:

94 percent expressed feelings of pride about their sibling

7 percent felt embarrassed by their sibling

4 percent would "trade their sibling in" for another

88 percent said they felt they were better people because of their sibling with Down syndrome

Of siblings aged 9-11:

97 percent said they loved their sibling

90 percent felt their friends are comfortable around their sibling

The third study evaluated survey responses from 284 people with Down syndrome (estimated response rate, 17 percent). The average age was 23, and 84 percent were living with one or both parents/guardians. The findings:

99 percent said they were happy with their lives

97 percent liked who they are

96 percent liked how they look

86 percent indicated they could make friends easily

4 percent expressed sadness about their life.

"As international discussion is mounting over the new prenatal tests, family members have now had their say about life with Down syndrome," says co-author Levine. "And, more importantly, the people with Down syndrome themselves have clearly stated that they consider their lives valuable."

In open-ended questions, parents reported learning a variety of life lessons - the top five being: personal self-growth, patience, acceptance/respect, love, joy. Asked what they would tell other prospective parents of a child with Down syndrome, the top responses fell into these categories:

You will experience joy/rewards

There will be struggles/challenges

You will experience love

Important to identify good support group/resources

Children with Down syndrome are more alike than different from typically developing children.

Siblings, asked what they would tell prospective parents having a child with Down syndrome, most often conveyed that the experience would be joyful and rewarding, though many also said there would be challenging moments.

Respondents with Down syndrome most often gave these kinds of messages for parents:

Love your baby/your baby loves you

Life is good/happy to be alive/positive

Don't worry/it's okay.

Their main messages for doctors were:

Life is good/I'm happy to be alive/positive

Please take care of our medical needs

Please give information to parents about school options for people with Down syndrome

Value us/we're okay.

The researchers acknowledge that the surveys are subject to selection bias, since members of nonprofit Down syndrome groups may not be representative of the general population of Down syndrome families; respondents were largely white and middle to upper class. There is currently no population-based registry for people with Down syndrome.

"Prenatal decisions about Down syndrome present profound and deeply personal challenges to expectant parents," says co-author Goldstein. "What has been missing has been the perspective of those living with Down syndrome. This study now provides the largest and most comprehensive portrait of life with Down syndrome to date."

The studies were supported by grants from the Tim White Foundation, the Fred Lovejoy House-staff Research and Education Fund, and the Joel and Barbara Alpert Endowment for the Children of the City.

Children's Hospital Boston is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 11 members of the Institute of Medicine and nine members of the Howard Hughes Medical Institute comprise Children's research community. Founded as a 20-bed hospital for children, Children's Hospital Boston today is a 396 bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about research and clinical innovation at Children's, visit: http://vectorblog.org .

CONTACT: Keri Stedman Children's Hospital Boston 617-919-3110 keri.stedman@childrens.harvard.edu

SOURCE Children's Hospital Boston

Wordless Wednesday; If Wombs had windows

2011-09-14T17:40:00.003-04:00

Clinical trials for Down syndrome drug at Roche Labs

2011-09-09T11:51:00.002-04:00

from PR Newswire

Roche today announced the initiation of its first Phase 1 clinical trial to investigate the safety and tolerability of a molecule designed to address the cognitive and behavioral deficits associated with Down syndrome.

"There is currently a large unmet medical need for the treatment of cognitive impairments in individuals suffering from Down syndrome," comments Luca Santarelli, Global Head of Roche Neurosciences Disease Translational Area. "Our strategy at Roche neurosciences is to specifically address these serious conditions that have no approved, effective or safe treatment. This is why we have a strong commitment to neurodevelopmental disorders, including genetic disorders like Down syndrome or Fragile X, as well as autism spectrum disorders."

Enhancing brain functions such as cognition and language in individuals with Down syndrome holds the promise to help these individuals conduct a more independent life. This may result from the improved ability to carry out every day's practical tasks such as finding an apartment, maintaining a job, or having a more fulfilling social life. These improvements can have a significant impact on functioning and quality of life of Down syndrome individuals as well as help reduce the burden for families, caregivers and the society.

"This study will target only adults between 18 and 30 years old, but we believe that an earlier intervention in Down syndrome has the potential for a greater medical impact," says Paulo Fontoura, Head of Translational Medicine in the Roche Neurosciences Disease Translational Area. "While we are still at the early stage, we are confident that our drug's mechanism of action can potentially open the door to further promising investigations in upcoming years."

Based on animal models, an imbalance between excitatory and inhibitory neurotransmission has been proposed among the underlying causes of altered brain function in individuals with Down syndrome. Roche's investigational drug is being assessed for its ability to address this imbalance by targeting the GABAergic* system.

*GABA: gamma-amino butyric acid

This placebo-controlled study will assess the safety and tolerability of the investigational drug in individuals with Down syndrome. It will recruit up to 33 individuals in one or two countries. For more information on the study, access the Roche Clinical Trials Protocol Registry and Results Database: http://www.roche-trials.com/

This is wonderful news. Once the pharmeceutical community catches on to the fact that there is more money (or at least as much) in improving the lives of those with Down syndrome than there is in ending them through prenatal testing and abortion, then we might have a true chance to give people with Down syndrome the same chance at a normal life that has been given to many others who have medical conditions.

Its about time!

This GABA drug sounds like what Dr William Mobley was describing in his lecture at Cold Spring Harbor Labs in spring of 2009. He estimated it would take ten years to bring the drug to the market, and now clinical trials are beginning after two years. That's eight years to go.

Read the entire article here.

STOP: Count your blessings

2011-09-06T13:16:00.001-04:00

Hurricane Irene had wreaked havoc upon the Quiet Corner of Connecticut where we live.
Gabbi and I were on a reconnaissance mission to our tiny hamlet when the unusual STOP sign message made us pause. Someone had stenciled "Count your blessings" in white under the word STOP. We smiled and sent up a quick "deo gratias", while continuing our important objective; to find potable water to bolster our diminishing supply. It had been two days since Hurricane Irene, and the power outage was fast morphing into the greatest challenge of our life as a family. Yet no one was hurt, our home was not damaged or in danger, and we were finding strengths within ourselves as the challenges mounted. And despite feeling grubby, we were having the adventure of our lives.
The initial hours of the hurricane were the easiest by far of the week which followed.Trees swayed in the rainy wind, and a few branches flew down. Naturally the power was out. but nothing disastrous had happened, and the girls and I felt oddly disappointed as we surveyed minor damage on our first walk around the neighborhood.
The big hurricane for which we had made extra trips to the store, secured the patio table, and filled containers of water, was a bust. Or so we thought.
The next day, we were dismayed to discover that most roads to our home were blocked by downed trees and alarming configurations of dead electric cable strewn across homes and roadways. All the local towns were without power, even the mighty Walmart was closed. The severity of the storm began to reveal itself to us, but the girls chipped in merrily fetching water from the stream across the street. singing the water fetching song from "The Jungle Book".
We rediscovered how to use the gas range and refrigerator in the camper, set up a field kitchen and dish washing station. There were three types of water we decided; Level One, bottled water for drinking only. Level Two for washing people and dishes, which after use, became Level Three;toilet flushing water. We learned to think about our every move, no one wasted water, food or effort, as the tasks were were engaged in cause sore shoulder muscles at night. We recovered the lost joys of board games, learned gin rummy, and discovered candlelit sponge bathing, Bella's compositions on the piano began to fill the evening stillness. I considered dusting off my violin.
After two days of relative isolation, our neighbors began to reach out. We swapped news on when the tree removal trucks would arrive and restore power, advice on where to find gas, news that the showers at the middle school were being offered to residents, and clean water was offered. We offered our fresh tomatoes, which were in full swing, in return, and took advantage of free water, showers, and any news we could get.

There is a great lack of humility in our do-it-yourself culture. When the hurricane and the week-long delay in the return of electric power forced us to seek help, we were humbled to find it so readily available. We had tears of gratitude spring to our eyes at the sight of the soldiers of the National Guard dropping off bottled water and military meals at the Town Hall, and our admiration for our soldiers grew as we ate some of their hearty meals, imagining soldiers in Iraq or Afghanistan eating the same beef stew and oatmeal cookies we ate, making their orange drink in their canteens. We were a little reluctant to use the showers in the school, yet met friendly smiles and helpful neighbors who were becoming friends. We got to know six new households over that week, and celebrated the restoration of power with a block party. After moving to CT three years ago from Long Island, outrunning Hurricane Hannah as it followed us up the coast, we finally could say we felt like integral parts of the community.
I knew from experience that days without TV would work wonders on the girls, and when we found time for the nightly rosary the TV had squeezed out, and began to giggle over the day's mishaps, we knew a joy that electronic gadgets had robbed us of. We attended daily Mass, made designs with mosaic blocks, and spent time planning our homeschooling year. We fixed the chicken coop in time for our new chicks to become egg laying hens, and canned tomato sauce for winter. We were becoming even more of a team!
So, when my husband, who was tending to internet customers out of power, arrived home on Friday, he was impressed that we were so independent. We secretly prayed that God would not let our power be restored just yet, we wanted to share our adventure with Dad for at least 24 hours more. He showed us that we had an extra well which we could have accessed by lowering buckets the old fashioned way, and we enjoyed my Minestrone soup dinner al fresco, proud of our accomplishments.
The next day found us seeking the internet at the library and buying groceries optimistically hoping that the food wouldn't spoil. Later that evening, the power was restored. We cheered the workers from New Hampshire as they passed our home, and resumed normal life, not without wistfulness about the strange beauty of the week where we were off the grid but far from powerless.

Take me to the fair

2011-09-04T23:09:00.001-04:00

We enjoyed two weeks with our Long Island family and friends at the beginning of August. This included trips to the petting farm near Grandpa's, trips with cousins to the beach and reunions with dear friends like Mary Faith and Tammy, a contributor to "A Special Mother is Born".
Here are Christina and Mary Faith enjoying the rides at a Fair for the Feast of the Assumption.
Every time these two get together, the time apart melts away and they are in sync again. They 'get' one another's signals in a way we moms can only admire.

Look at their concentration while driving. . .and praying.

If you missed us on "Faith and Culture" the first time, here's your chance

2011-08-25T19:30:00.003-04:00

Show host Colleen Carrroll Campbell just informed us that EWTN is re-airing our "Faith and Culture" interview on the following dates and times, according to the online schedule.
Sunday Sept. 18 at 5:00 PM EST,

Monday Sept 19 at 2:30 PM EST

Wednesday Sept 21 at 11PM EST.

Its called "Keeping Infants with Down Syndrome".

If you miss this, its not archived, you'll have to purchase the DVD in the EWTN Catalogue.

The Holy Father meets disabled children in Madrid

2011-08-23T16:29:00.000-04:00

I wrote a few reflections on the poignant meeting of the Holy Father with disabled youth in Madrid. Its over at Catholic Vote.

Down syndrome achieves meets with Congressional members about NIH funding

2011-08-19T08:58:00.000-04:00

This is a subject dear to my heart, obtaining fair funding for Down syndrome research.
There is an average of $100 spent for each person in this nation who has Down syndrome, while for other diseases like Cystic Fibrosis, its more like $4,000 according to the Alan Guttmacher institute.
But Down Syndrome Achieves met with our friend Cathy McMorris Rogers (R-WA) to discuss how this can be remedied.

DownSyndrome Achieves, D.C. Hill Visit

On July 26, DownSyndrome Achieves Founder & CEO, Lito Ramirez, and DSA Legislative Advocate, Dean Fadel, met with Congressional leaders to help revive stalled efforts to increase federal funding for DS research, which sits at just $19M today.
See more photos from these exclusive DSA closed-door meetings with key legislators, including Representatives Cathy McMorris-Rogers (co-chair, Congressional Down Syndrome Caucus), and Pat Tiberi (member, House Ways & Means Committee).

Against the backdrop of the debt ceiling crisis, DownSyndrome Achieves was there working with Congressional leaders to build a more meaningful and substantive national strategy for Down syndrome.

Catholic Writer's Guild Conference Live

2011-08-10T10:35:00.000-04:00

When I learned that my book, "A Special Mother is Born" would not be available for another month or two, I was discouraged. I had big plans to market the book at the Catholic Marketing Network and the Catholic Writer's Conference Live which occured simultaneously in the Valley Forge Conference Center last week. Yet, I remembered last year's conference, and the support which CWG members gave one another, and decided to attend anyway, just to see my friends.
Leaving the girls at Dad's house, I arose at dawn on Wednesday the third of August, packed the van and headed for the conference. Despite being a bit too tired for an adventure of this magnitude, the trip was going smoothly, until I hit New Jersey. I smelled burning rubber through the van window which is stuck open. But then, I was in New Jersey, passing oil refineries. Soon however, it was obvious that my 11 year old van was contributing to the smells, and decided to get off the New Jersey Turnpike. By the time I was at the tollbooth, the right front tire was smoking so badly I got away without paying the entire toll, I think the toll taker was afraid his life was in danger! I pulled into the nearest parking lot and called my husband. He had no idea what was wrong, so I asked the hotel clerks where to find a mechanic, fearing what would happen. I pictured a dishonest man anxious to fleece a hapless woman with a smoking car far from home.
But it wasn't necessary. When I started up the car, the wheel was fine. I cautiously drove the rest of the way to Pennsylvania, wondering why things were suddenly resolved. It must have been my frantic prayers, coupled with that of my husband. The car has been fine since.
I checked into the local discount motel which was in the middle of a highway interchange, and though I was thrilled with the reasonable price, the sparseness of the lobby and the fascinating clientele made me wary about returning there to sleep in the evening (oh and what was that odor emanating from the carpet?). I forced the thoughts out of my mind. I was travelling on a shoestring budget, there was no money for luxury. Mom's big conference was no luxury junket!
When I arrived at the Valley Forge Conference Center, I was soon greeted by my friends, shared my story and settled into the conference. I met Viper author John Desjarlais, and CWG President Ann Lewis, and forgot my troubles. I attended Michelle Buckman's intense writing workshop and immersed myself in the craft of writing. Her literary insights were so intense that soon, happy memories of my first class at college; Freshman Introduction to Literature came flooding back. High in the century old Administration building, Professor Askin taught English majors the secrets of great literature. We felt ourselves a priveleged group, feverishly taking notes as we delved into the riches of English literary tradition. We were no less priveleged, that morning in Valley Forge, as the top female Catholic novelist taught us the secrets of her stunning literary success. Her latest book "Rachel's Contrition" topped the charts in female fiction in Amazon the past year, and won the CWG's first "Catholic Arts and Literature Award" that year.
The idea of a novel, which I once considered a mere day dream for me, a non-fiction writer, began to take shape in my mind, thanks to Michelle's specific guidance on how to make a character come alive. My main character, Andres Keller, began to haunt my thoughts in the corridor of the hotel, taking shape on his own, nagging me to put him down on paper. Is that how novels are written? I wondered.
An evening of entertainment pushed Andres to the back of my mind; we saw "The Mighty Macs" and "Courageous" which kept me alternating between hearty laughter and actual sobs. I sat alone and was exhausted on my trip to the motel, which should have taken five minutes, but, thanks to a confused GPS, was more like a scavenger hunt. I travelled 23 miles to the motel a mere mile away!
When I finally reached it, I was dismayed by the atmosphere; an outside door was propped open to let in rowdy truckers who apparently were long lost army buddies by the tenor of their celebration, which occupied most of the first floor, where my room was located. I snuck in,carrying only the clothing I would need for tomorrow, hoping to escape an invitation to join them. I was so happy to escape unnoticed by the partiers, that even the sour smell of the stained blue carpets in my room, failed to discourage me as I double locked the door. zzzzzzzzzzzzz I fell asleep before hitting the hard mattress of my bed.
To be continued. . ..

Surgery for the unborn baby with Spina Bifida

2011-07-18T20:56:00.001-04:00

Yes, I knew it was possible, and I applaud it. Yet, the unsettling thing is that the listeners of NPR are amazed by the fact that an unborn baby is worthy of surgery, some are actually saying that it runs contrary to natural selection and good economic sense. Read the article here.
There are scientists who are discovering possible pre-natal biochemical therapies for Down syndrome, like Dr Jim Paddy Baggot of Los Angeles, CA. He sees some ways that the malformation of babies with Down syndrome can be stopped by intervening before birth by making sure the developing baby is given the right chemicals. to overcome genetic defects. Dr Baggot describes his work;

Initially, my research centered on pathways involving folate metabolism. This was because earlier research conducted by Drs. Lejeune and Peeters suggested a problem of folate deficiency in Down syndrome. And indeed we did find an abnormality in the pathway of folate metabolism.
When we compared our work with other similar research, we found that our results can be explained by a gene that was present in chromosome 21.
There are normally 2 copies of chromosome 21 in each cell. With Down syndrome, there is an extra copy of chromosome 21. That means that there are three copies of each gene on chromosome 21. Gene products of chromosome 21 will be increased by 50%. What we saw in our data was that the substrate of the gene product was reduced by similar amount. When a result is caused by a 50% increase of gene product, this is called the gene dosage effect. As far as we know, we were the first to show gene dosage effect on this gene, and the first to show gene dosage effect in amniotic fluid.
As part of our comprehensive global survey, we looked at carbohydrates and simple sugars. It revealed no major abnormalities. It was important to look at simple sugars because one syndrome of mental retardation known as galactosemia is characterized by an excess of a simple sugar, galactose. This work was published online at Internet Journal of Gynecology and Obstetrics.
In 2008, our research team was blessed with the publication of two additional articles in the prestigious medical journal Fetal Diagnosis and Therapy.*

Its time for Morning Star Camp!

2011-07-15T22:35:00.000-04:00

For 14 year old Bella, its the most anticipated two weeks of the year; when she spends a glorious two weeks at Monfort Retreat in Washington, New Hampshire a Morning Star Camp.
See the beautiful slideshow of last year's camp here. You can see Bella in her blue and white plaid shirt proudly displaying her very first handmade basket. I think every child should have this type of experience, friendship, adventure, sports, crafts, campfires and prayer in the woods, don't you?

What do we do with out leisure time?

2011-07-06T00:47:00.001-04:00

Driving home from a day long cookout at the beach where I spent many summers of my childhood, it slipped out, "sometimes I wish I weren't SO CATHOLIC!". Then, recoiling in horror, I hoped that none of my kids were listening. Whew, they went home with Grandpa and weren't in the car!
What did I mean by that statement? I meant after a day full of watching people who have two incomes, and lots of stuff:boats, fancy beach gear, including $5,000 canopies, fine wines, gourmet food, and better clothing than I have, discuss nothing but their stuff. homes, boats, vacations, clothing, investments, and careers, I was feeling, well. . . if not envy then a fair amount of longing for what is generally considered the good life.
I am a teacher, after all, if I had kept that tenure-track job though my daughters' early childhoods, I'd be retired at $80,000 a year instead of writing for free and hoping against hope that I can get my basement finished someday. I could live in the posh beach town outside NYC where I grew up instead of the rural part of CT where life is simple and the people don't have boats besides canoes.
Sometimes I think I want that lifestyle. . . then I get over it and remember who I am.
Today, I went for a long walk in the cool afternoon along the river near our home, with Christina and our retriever Molly. We sat for thirty minutes with our feet in the cool water, listening to the rush of water on the stones, Christina pitching rocks into the river, Molly exploring and me thanking God for the simple life. No one spoke of investments but we were invested. In each other.
I have long had the conviction that our pastimes have to be simple, since our time belongs to God. He needs Catholics to be engaged in the battle for souls, in this life, and this leaves little time for recreation and unnecessary second incomes. Watch this video from Michael Voris on this subject.
Sometimes the world tempts me to forget this sense of mission.
May Our Lord keep me focused, this world is not my home.

New Zealand Ministry of Health sued in International Criminal Court for eugenics violations

2011-07-05T14:12:00.000-04:00

For immediate release

A group of parents of children with Down syndrome have lodged a complaint with the International Criminal Court against the Governments(of New Zealand) screening programme for Down syndrome.

Group spokesman Mike Sullivan said the group has applied to the Office of the Prosecutor under the provisions of Article 15.1 of the Rome Statute of the International Criminal Court. The Court has confirmed that the application is being considered.

The Prosecutor has been asked to investigate and intervene in the Ministry of Health's antenatal screening programme, as it persecutes against people with Down syndrome through the prevention of their births.

Evidence was presented to the Court's Prosecutors showing the screening programme prevents around 75% of births of people with Down syndrome in New Zealand.

The programme is promoted and funded by the government at a cost of $9.4M per year, or around $75,000 per unborn child diagnosed with Down syndrome.

The complaint names the Minister of Health as responsible for the programme under his statutory role. Article 27 of the Rome Statute provides that a role as a government official shall in no case exempt a person from criminal responsibility.

Mr Sullivan explained the complaint presents evidence obtained under the Official Information Act. This includes details the previous Labour Minister of Health had foresight that the consequences
of the screening programme would be the prevention of births of people with Down syndrome via selective abortion, leading to a significant reduction in their numbers. ``The current Minister of Health is continuing with the programme in the knowledge that the vast majority of pregnancies with Down syndrome will be aborted and has consistently refused to address any of our concerns,'' Mr Sullivan said.

The group who lodged the complaint is comprised of 37 concerned parents, siblings and supporting organisations, including a number of doctors.

The groups position statement is genetic screening must not be used to prevent the birth of unborn children with Down syndrome, as this is discrimination.

The group recognises genetic testing may help some parents prepare for the birth of a child with Down syndrome, in which case it should only be only directed towards safeguarding or healing the unborn child.

For further
information contact:

Mike Sullivan, 09
436 1498 0r 021 406 266
mike.b.sullivan@xtra.co.nz

Mike Sullivan loves our kids!

2011-06-24T09:49:00.002-04:00

Read my blog post over at National Right to Life News about Mike Sullivan, the engineer from New Zealand who is suing his government over eugenic abortion in the International Criminal Court. I hope this idea catches on, it means that this could be done in every nation which has signed onto the Rome Treaty and has universal pre-natal testing for Down syndrome and other anomalies.

Colleen Carroll Campbell: A dangerous perfectionism

2011-06-23T12:03:00.005-04:00

Read this eloquent column in the St Louis Dispatch by EWTN series host Colleen Carroll Campbell on the new pre-natal screening tests for Down syndrome.

She says, Count Eileen Haupt and Leticia Velasquez, two mothers of daughters with Down syndrome, among the latter. The pair recently founded an organization known as Keep Infants with Down Syndrome, or KIDS. Their goal: to encourage expectant parents of Down-diagnosed babies by spreading the word about research advances and the joy these special-needs children can bring.The potential audience for their message is vast. Today, many women are bearing children later in life and thus facing higher odds of a prenatal Down syndrome diagnosis. (A 20-year-old woman has a one-in-2,000 chance of conceiving a baby with Down syndrome; for a 40-year-old woman, that chance is one in 100.)

Colleen Carroll Campbell: A dangerous perfectionism

Ephphatha! Be Opened!

2011-06-22T23:55:00.000-04:00

For six years, Christina has made extremely limited progress in learning to speak.

She has a 50 word vocabulary and does not use words on a regular basis to meet her needs, preferring to use hand motions. We have only heard her say one original sentence, years ago, and it has weighed heavily on my heart as a mother. But, after three years of inclusive education had failed to address this problem, I was at a loss as to what to do next.

Last January, Dr Judith Mascolo, Christina's doctor and the mother of a child with Down syndrome herself, was observing Christina and suggested she be evaluated at UCONN Speech and Hearing Center. She believed that Christina was able to speak much more than she is currently speaking. She gave me hope.

We had Christina's speech evaluation today at UCONN and the director was convinced that Christina is "stimulable", that there is hope she can learn to speak more, and will see her twice this summer and then begin regular sessions in September for 6-8 weeks, with a re-evaluation to determine if they were effective.

I am still nervous since its possible that she does not advance, and then they decide they cannot help her. I can't tell you how devastating that would be to me if they decided Christina is making no progress after two months of therapy. It haunts me and almost made me despair of even trying to help her. I need to increase my faith.

I ask you all to pray with me that Jesus will repeat what He did when he healed the deaf mute in Mark's Gospel. He commanded, "Ephphatha, be opened!" and the man spoke. May He do that to my little Christina!

Please keep this in your prayers.

Down syndrome Dad fights eugenic abortion in New Zealand

2011-06-22T10:01:00.002-04:00

Following TV3's 60 Minutes(on New Zealand television) documentary on June 12 “Down but not out'', parents of children with Down syndrome announced they will lodge a complaint with the International Criminal Court against the Governments screening programme for Down syndrome.

The basis of the parents' complaint is that the Government's antenatal screening programme specifically targets foetuses with Down syndrome and other rare genetic conditions, through the prevention of their births.

The 60 Minutes documentary was introduced with the statement “people with Down syndrome may soon disappear from the face of the earth.'' 60 Minutes revealed the new screening programme was introduced without public consultation and the Ministry of Health “did not bother'' asking the opinion of anyone who has Down syndrome, about the programme.

Mike Sullivan, father of three-year-old Rebecca Sullivan who has Down syndrome, featured in the 60 Minutes documentary. He said people with Down syndrome and other disabilities are human beings who live full and rewarding lives. “They must be treated on an equal basis with other members of our society, without any form of discrimination.''

De-Anne Jensen, mother of three with her oldest son having Down syndrome also featured on 60 Minutes. “Government documents say it costs less not to have children with Down syndrome around, so it looks like they are working to do away with Down syndrome. It's cheaper; you don't have to pay for the special needs things. The Government and medical experts are putting a monetary value on our baby's lives,'' Mrs Jensen said.

The parents' complaint references Government Cabinet papers obtained under the Official Information Act stating the outcomes of the programme will be a reduction in the number of births of
people with Down syndrome, with around 90% of unborn children diagnosed with the condition being terminated. The persecution of an identifiable group of the civilian population through the prevention of births is specifically prohibited under the Rome Statute of the International Criminal Court, to which New Zealand is signatory.

The group is supported by parents with other disabilities that are being similarly targeted and other organisations who support their concerns.

The groups position statement is that genetic screening must not be used to prevent the birth of unborn children with Down syndrome, or cause harm to any unborn child.

The group recognises genetic testing may help some parents prepare for the birth of a child with Down syndrome. Any testing must respect the life and integrity of the unborn child, cause no harm, be only directed towards safeguarding or healing the unborn child and be presented in a way that does not discriminate against people with Down syndrome or any disability. Any testing must be developed in full engagement with those with Down syndrome.

For further
information contact:

Mike Sullivan, 09
436 1498 0r 021 406 266 mike.b.sullivan@xtra.co.nz

Bella graduates from St Joseph School

2011-06-15T12:50:00.002-04:00

Her father and I are so proud of our beautiful, intelligent, highly social young lady who made a seamless transition from homeschooling for six years to this wonderful Catholic school in Connecticut. She was on the honor roll for all her three years there, and graduated as president of the Student Council. Here she is with her best friend Mary, beaming with pride and a little wistfulness that her school days at St Joseph are over, she loved that place!
We are thinking about homeschooling her for high school, unless Our Lord gives clear indication that He has other plans, but I know that she is a serious student and will make the most of any educational opportunity which comes her way.

Welcome Faith and Culture Viewers!

2011-06-05T11:29:00.000-04:00

I've you saw this show on EWTN's "Faith and Culture" with Colleen Carroll Campbell this morning, welcome!
If not, you have another chance on Wed June 8 at 11:30 PM. Eileen Haupt and I tell Colleen about how the joy of life raising our two special daughters made us want to do something to lower the tragic 92% abortion rate of babies with Down syndrome.
Welcome to Cause of Our Joy, come in an sit a spell and get a peek at everyday life with my daughters Gabbi, Bella, Christina, and my husband Francisco as we share the joy of our special family. Leave a comment and tell us about yourself, and welcome to our family!

Gabbi's birthday schedule

2011-06-01T20:53:00.001-04:00

I moved to Connecticut to live the simple life in the country.
Observe how successful I've been.

Gabbi's 18th birthday schedule:

9AM Mass for the Solemnity of the Ascension of Our Lord

10AM Gabbi works on her theology final for Kolbe Academy so she can graduate HS in July

12 noon; job interview at Mohegan Sun Casino
(don't panic, she'll work in a restaurant, hotel or shop, NOT the casino!)
1PM Shopping to spend birthday cash at the mall

2:45 Pick up Bella from school

4PM Family dinner

5PM Bella's softball game

5:30 Pick up my sister-in-law from work

6PM Ave Marie Home Board Meeting Mom and Christina
(concurrently)
6PM Gabbi and friend see a movie at local theater

7PM Pick up Bella from softball game

8PM the family reunites over homemade birthday cake

Whew! I'm tired just reading this!
Good thing we live in the Quiet Corner of CT!

Welcome to Sonrise Morning Show Listeners

2011-06-01T09:11:00.000-04:00

And thank you Brian Patrick for covering so much important information in our interview! Brian understands that when you disrespect the right to life of those with Down syndrome, all our dignity is diminished.
If you are not familiar with the Show click here.
All the Catholic luminaries like Danielle Bean, Donna Marie Cooper-O'Boyle, Patrick Madrid, Sarah Reinhard are on this wonderful show about everything Catholic.

Webinar at noon today on Down syndrome-Alzheimer's Link

2011-06-01T08:43:00.001-04:00

William Mobley leads the Down Syndrome Center for Research and Treatment at the University of California, San Diego. The new center plans to integrate treatment and therapy with academic research on Down syndrome. Since people with Down syndrome are at high risk for Alzheimer’s disease, the center will make the nexus between the two disorders a prime research focus. Where can researchers in the Down syndrome area make headway, and perhaps advance the our understanding of Alzheimer's disease?
You can learn more by joining a live webinar on Wednesday, 1 June 2011, at 12:00 noon, U.S. Eastern time. In this webinar, Dr. Mobley will share his vision for the new center and discuss how the latest research sharpens researchers’ understanding of both diseases.

Please consider forwarding this information to friends and family who would be interested in this presentation. Readers can sign up here to receive frequent updates on Down syndrome cognitive research.

Robert C. Schoen, Ph.D.
Research Down Syndrome
Chicago, Illinois

Phone: RDS 877.863.2121
Email: rschoen@researchds.org or info@researchds.org
Website: www.researchds.org

Our Victory Garden

2011-05-27T15:14:00.000-04:00

My volunteer time at the computer means I don't usually work for pay, so I am counting on a good harvest to help provide fresh produce for my family. I am learning to preserve food; last year, we had a bountiful harvest and canned enough tomatoes to last till Thanksgiving. It is very nutritious, tasty and tomatoes do NOT grow Botulism, so you can't kill anybody, so they are a great place to start canning. We have 24 pullets who will begin laying this summer, and we may be in the egg business soon.
Here is a great post on how to preserve food to feed your family in times of crisis.
We are planning to can more tomatoes, beans, zucchini, peas, squash, cucumbers, corn, lettuce,green peppers, Swiss Chard, dill, mint, and basil. We will freeze our green beans, can our tomatoes as we did last year, and learn some more canning and freezing techniques.
We call it our Victory Garden, in hopes that my volunteer work can help conquer the Culture of Death which has made great strides recently in this nation.

Mandatory pre-natal testing to be considered in France

2011-05-21T23:49:00.000-04:00

My friends at the Lejeune Foundation in France are calling for all those who oppose the eugenic abortion of babies with trisomy 21 and live in France to sign a petition opposing this practice. France already has an abortion rate of 96% once Down syndrome is detected through pre-natal testing, universal testing would be catastrophic to this population and to human rights in general, setting off a possible chain reaction throughout Europe. Below is a translation of the original letter from the Foundation Lejeune.

On May 25 and 26 of this year, the National Assembly [the lower house in the French Parliament] will resume its debates and votes concerning the proposed bioethics law.

If the deputies follow the recommendations of the Senate and the Special Committee on Bioethics, the pendulum will swing, in the next few days, and France will implement a policy of eugenics with regard to infants with Trisomy 21 (Down syndrome.

Because all of us are vulnerable and called to show solidarity with those who are a little more so, we cannot accept this or let it happen.

Please act today by signing the petition that we will send to the legislators and by sending this message to everyone on your e-mail address list.

We thank every one of you for your irreplaceable support of this petition drive.

The Staff of the Jérôme Lejeune Foundation

WHY A PETITION AGAINST EUGENICS?

Because the legislators in both Houses of the French Parliament are currently debating the contents of the forthcoming bioethics law and are preparing to legalize systematic screening for Trisomy 21.

Because 96% of the babies diagnosed before birth as having Trisomy 21 are eliminated, some of them as late as the ninth month of pregnancy. Instead of expanding this search-and-destroy mission aimed at infants with Trisomy 21, we should instead take advantage of the future bioethics law to put a stop to the current trends!

Because obliging the doctor to propose prenatal diagnosis to all expectant mothers would lead us from a de facto situation of eugenics to a legal system of eugenics that completely contradicts the Civil Code (art. 16-4).

Because infants with Trisomy 21, like all of us, want to live, to love and to be loved.

Because the degree to which a society is civilized is measured by its ability to protect its weakest members.

Because all of us are vulnerable and called to show solidarity with those who are a little more so.

Because, with technological advances, it will very soon be possible to detect many other disorders or predispositions to diseases. The logic of search-and-destroy will be extended to an ever-increasing number of babies.

Because by choosing to eliminate the sick instead of trying to cure their illnesses, science and medicine abandon their purpose and deny themselves.

The purpose of this petition is to denounce the eugenicist ideology informing the bioethics law, which is clearly expressed by its intention to screen systematically for Trisomy 21, and to challenge our legislators concerning the blatant contradiction between the Civil Code and current eugenics practices.

If your share our concern and our willingness to fight for greater respect for the lives of the most vulnerable, then sign this petition, which we will forward to the members of Parliament and to the French government.

Life is the most important political issue for Man: the members of Parliament, like the future candidates for the Presidency of the French Republic, cannot ignore this. They must recognize the determination of the French electorate on this subject [and also realize that people of good will in other countries will be watching carefully how they deal with this latest threat to fundamental human rights].

SIGN THE PETITION HERE.

Gabriela discusses pro-life indy filmmaking on "The Face of Pro-Life"

2011-05-19T00:17:00.001-04:00

Gabbi recently did an interview with "The Face of Pro-Life" TV show about her film "An Extra Special Missionary" for the Goodness Reigns Film Contest which inspired a documentary on the Archdiocesan program, "Crossroads". on Holy Saturday, (click on archived shows, date April 23, 2011, our portion of the show begins on 8:35). She is as good in front of the camera as behind it, and her dazzling smile when she discusses her love for her sister speaks volumes about the blessing Christina has been for her family and community.
You can watch "The Face of Pro-life" TV show by clicking here.

Please take time to complete this survey about families with a child with Down syndrome

2011-05-15T09:15:00.000-04:00

This is from Marcia Van Riper, a nursing professor at University of North Carolina School of Nursing

Update on Study about Adaptation and Resilience in Families of Children with Down Syndrome

During the past year, many of you were kind enough to take time out of your busy life to complete our online survey about adaptation and resilience in families of children withDown syndrome. In addition, many of you expressed interest in being interviewed. To date, almost 250 parents have completed the survey. As far as the interviews, I have conducted around 35 interviews, but plan to do many more now that the semester has ended here at the University of North Carolina School of Nursing were I teach.

The main reason I am emailing you today is to let you know that there is still time to complete the survey if you have not yet had time to do it (or if you started it, but did not find time to finish it). Also, if your partner or spouse has not yet had time to complete the survey, I hope you will encourage him or her to do so. Currently the majority of the parents who have completed the survey are mothers (190 mothers and 58 fathers). I believe it is very important to hear from both mothers and fathers, so again, I hope you will encourage your partner or spouse to complete the survey. In addition, you are welcome to share the links to the survey with other parents of children with Down syndrome. Currently, we have versions in English and Spanish. Soon we will have versions in Dutch, Italian, Japanese, Korean and Portuguese. Ultimately, my goal is to collect data from 2,000 to 3,000 parents of children with Down syndrome. Then, to make sure this information is shared in both the popular media and the literature health care professionals read. Your stories are very powerful stories, ones that will help change attitudes about life with Down syndrome, as well as lead to improved outcomes for individuals with Down syndrome and their families.

Here are the links –

English Version

Link for mothers: http://www.surveymonkey.com/s/3KBM795

Link for fathers: http://www.surveymonkey.com/s/3KBQN5M

Spanish Version

Enlace para mamas http://www.surveymonkey.com/s/ZJ6C3YT

Enlace para papáshttp://www.surveymonkey.com/s/93QXKQC

Thank you to all of you who have already completed the survey and/or been interviewed. I have been doing work with children with Down syndrome and their families for over 25 years, and truly you and your children have been my best teachers.

Best Wishes,

Marcia

Marcia Van Riper, PhD, RN

Associate Professor Chair Family Health Division

School of Nursing/Carolina Center for Genome Sciences

University of North Carolina at Chapel Hill, NC

CB #7460 Carrington Hall Chapel Hill, NC. 27599-7460

President, International Family Nursing Association

vanriper@email.unc.edu 919-966-4284

The Perfect Storm now faces those with Down syndrome

2011-05-11T18:41:00.000-04:00

My eloquent friend and co-founder of KIDS, Keep Infants with Down Syndrome Eileen Haupt has really nailed it on this opinion piece for the Burlington Free Press.
Here's the heart of her piece;

There has never been a better time -- in the history of mankind -- for babies with Down syndrome to be born. There is better recognition of their potential, greater knowledge about this genetic condition, supportive laws, inclusion in schools, exciting new research that may lead to treatments for cognitive challenges, and in general, more understanding. In particular, advanced medical technology has significantly improved the quality and longevity of their lives.
But it seems advanced medical technology is a double-edged sword. For it has also enabled the development of more-accurate methods of prenatal testing to diagnose babies while still in the womb, thereby making them targets for abortion. Dr. Brian Skotko of Children's Hospital in Boston estimates that a shocking 92 percent of babies diagnosed with Down syndrome in utero are aborted.

Why is the moment just BEFORE we are about to have a scientific breakthrough in treatment for the cognitive delays of Down syndrome, are we also preparing to "eradicate the disease"? Are we deliberately turning a blind eye to science or so determined to form "the perfect race" that we don't care if things have never been better for those with extra chromosomes.
It makes me very sad and angry this Culture of Death. Oh Lord, we stand in need of Your grace!

Mother's Day Montage

2011-05-10T22:30:00.002-04:00

Make an on-line slideshow at www.OneTrueMedia.com

Mother's Day at Old Sturbridge Village

2011-05-10T21:11:00.000-04:00

Christina working in the Cooper's shop

Our stagecoach ride

I hadn't been to Old Sturbridge Village since the Biccentennial. I was in junior high and it fired my adolescent imagination to enter the world of the 1830's complete with actors in period costume. I asked to be taken there for my Mother's Day gift this year, we got a membership to be able to visit anytime, since it's only 45 minutes from home. We enjoyed it tremendously, from Christina who was fascinated with the lambs and the 19th century churches (did you ever see anyone make the Sign of the Cross in a Quaker Meetinghouse?!) to Gabbi who took a fancy to the blacksmith with blue eyes, Bella who was gifted at 19th century games like hoops, to Francisco who studied each facet of the water-powered saw mill.

My favorite building was the Towne house, a large colonial-style home like our own, and, like ours, was home to several borders! We are living in many ways, a traditional life with extended family members staying with us, and attempting to grow our own food in our gardens and henhouse. The commercial kitchen in the cellar was fragrant with cheesed curing in the pantry, something my mother-in-law does in El Salvador but I haven't tried yet. I am happy expanding my canning operation this year and am hoping to branch into winemaking in a few years when my grapevines begin producing.
We all enjoyed watching the cooking demonstration over the hearth. So much work was involved in preparing meals in those days.
Our meal was delicious; we ate dinner at the Tavern patio in the heart of the village. Francisco and I enjoyed Montreal Roast Chicken with rice and roasted vegetables, and Isabella enjoyed clam chowder served in a loaf of bread. Francisco treated us to a stagecoach ride after dinner, and Christina's eyes shone as the carriage bumped along. It was the highlight of a lovely day we will long remember. We rode home through the hilly countryside and Gabbi said, "back on Long Island, you go to Bethpage Village Restoration" and when you leave, you are immediately in suburbia, the 21st century hits you in the face, you leave Old Sturbridge Village and you see scenery and homes which makes you feel like you never left"
Exactly.

New booklet for parents whose children are diagnosed with Down syndrome

2011-05-06T00:50:00.000-04:00

If money talks and it does, that the National Institute of Health is telling us, "eliminating babies with Down syndrome is a priority to us". Listen to this: the NIH funds autism research to the tune of $181 milllion but has yet to fund ONE DOLLAR of research to treat Down syndrome. They didn't even have a research plan till a grassroots movement of parents and the newly formed Congressional Down Syndrome Caucus and forced their hand, and only recently they asked if IF they should fund research to help those with Down syndrome overcome some of the cognitive deficits.
Now I find out that the NIH has funded million in research for search-and-destroy pre-natal diagnosis.

Last week, Gene Security Network announced a 2 million dollar grant from the National Institutes of Health (NIH) to conduct a clinical trial for non-invasive prenatal diagnosis (NIPD); however, the Prenatally and Postnatally Diagnosed Awareness Act that passed unanimously in 2008 to provide information about conditions, like Down syndrome, has gone unfunded for the past three years. One testing company has already announced more advanced prenatal blood tests for Down syndrome to be released this fall, meaning more accurate testing will be available without the accompanying information needed to support the patients.

Thanks be to God the National Down Syndrome Society has funded an informational booklet to help parents whose unborn or newborn child has been diagnosed with Down syndrome. The CEO of Lettercase who produced the booklet describes it;

"Our booklets give patients the full scope of Down syndrome with information that has been vetted by both medical and disability experts. It is essential for both the federal government and testing companies who are putting funds toward testing to also invest in credible patient education. It is essential that we establish a model, not only in theory but in practice, for responsible testing as this technology continues to evolve for more and more genetic conditions."

So despite the failure to fund the Prenatally Diagnosed Conditions Awareness Act, this booklet will be doing what that bill has not been able to do, inform parents with the truth, not with outdated stereotypes.

Read the entire article here.

Our Beatification Party

2011-05-02T19:09:00.000-04:00

We celebrated the Beatification of Pope John Paul the Great at our house with our friends the Bothurs from 11 On My Own. Gabbi and Irina cooked, with help from me, Bella and Milagro. Irina made Pierogies from scratch, and yes they are as good as they look. We made stuffed cabbage and kielbasa, with strawberry shortcake for desert, the color of the Polish flag.

We played hymns like "Fisher of Men" which is reputed to be John Paul's favorite and my favorite Polish hymn, Serdeczna Matko (Sorrowful Mother) which you can listen to here.

Thanks to the time lag, we had to watch the beatification later that evening, but we watched the EWTN coverage of Divine Mercy Sunday at the Shrine in Stockbridge (Danielle you were great as always!) and then went to church for blessing of our new Divine Mercy image, recitation of the Chaplet of Divine Mercy, confession and benediction.

It was a blessed day, with grace from God reflected in the radiant sunshine.

Book Review: The Lily Trilogy

2011-04-29T15:47:00.000-04:00

Novels can be dangerous; if they are compelling, they threaten to suck up all of a busy mother's time away from her children. For half a week, I have been capitalizing on the distraction of my family or stealing needed sleep from myself, in order to plunge headlong into the world of Lily in Sherry Boas' books The Lily Trilogy. Some novels tempt you to want to live in a fantasy world, to keep the characters you have come to know and love alive.

I wondered, then, why I was becoming so engrossed with a book about an acerbic old lady alone in a nursing home within the iron grip of the final stages of Parkinson's? It was the way author Sherry Boas described her adopted daughter Lily. Lily is a young woman with Down syndrome whom Bev had reluctantly agreed to raise when her sister Jen died of cancer at 39. I had never read a novel with a character with Down syndrome before, and Mrs. Boas write about Lily so vividly and with such appreciation of her childlike joy and limitless love, that I was immediately drawn in.

But the compelling novels of the Lily Trilogy: Until Lily, Wherever Lily Goes, and Life Entwined with Lily had something more attracting me than merely an affinity for those with Down syndrome, something deeper. I immersed myself into the world of a lonely old lady whose life was coming to an end, and then the lives of her adopted niece Terry and grandniece Beth in the subsequent books. I lost myself not because of exotic locations (Washington State) or romantic heroes. I was enthralled by such exquisitely detailed characters made me care deeply about what happened to them, whether Bev would die lonely and bitter, whether Terry would give up on her marriage to her handsome Jake who never picked up a tool around the house, whether Beth could open her broken heart and learn from Lily, that nothing matters in life more than love. I had to know what happened to them, and read these three books at a breathless pace, finding my heart wrapped around the characters. Especially the lovable, stubborn Lily who never gives up on someone she loves.

The characters in the Lily Trilogy are as real as your own family, and as flawed. Yet, there is a theme in these novels, a theme of redemption which starts faintly at first, as a thirty-something Lily walks her frail aunt down the nursing home corridors to patiently feed her meatloaf and mashed potatoes even though she has long ago lost her sense of taste, Lily gives the love Bev meted out to her in tiny pinches, in unmeasured generosity Bev knows she doesn't deserve. But Lily's prodigious love changes Bev, and heals her. Not by taking away from the suffering of losing control of her limbs to the Parkinson's, but helping her to see beyond this life, to an eternal love mirrored in the gentle touch of the soft hands of a young woman whom the world rejects.

The power of selfishness to destroy lives versus the power of self-giving love to restore hope is the theme of this amazing story set in the future. Strange as it was to see dates like 2066 written as dates in the past of the novel's characters, this is no science fiction book. It is a story about real people who resemble people around us, whose flaws hurt and whose love heals us, and the hope that turns despair into love though the power of pure intentions.

The Lily Trilogy are the most Catholic of books in that that glory of the fullness of truth well lived and the devastating consequences of the Culture of Death are juxtaposed in stunning relief. The story tells it all, with profound relationships and moving symbolism, and enough realistic detail to remind the reader of a similar drama in their own lives.

I hugged my nine year old daughter with Down syndrome each time I reluctantly put the books down, and saw heretofore unappreciated qualities in my family. The Lily Trilogy filled my heart with gratitude for my family, and made me determined to be the catalyst of God's healing in my family.

Give it to your mother for Mother's Day and let a little of Lily’s light intertwine in your own life.

These are the novels I want my daughters losing themselves in this summer. I want to sit outside with cups of tea in the summer twilight and talk about Lily, Beth, Pablo and Terry. Then, I want to pick up the books and visit them again. These books, after drawing me into their world, make me reflect on my own with appreciation and want to become the transformed Terry who sees the nobility in her husband she missed in 20 years as he moved across the country to care for her sister Lily. To make my home radiate with the joy of their renewed love. To take my precious nine year old daughter Christina in my arms and thank her for the joy she has brought to us, and not to fear what her adulthood will bring. Whether or not she lives independently, she, like Lily will be a blessing to whoever shares her life.

How many times can it be said that a novel makes you a more grateful, loving person who reenters life from the world of the novel to embrace the challenges which sent you running into the pages of the book in the first place?

Recommended for ages 14 and up, no objective content.

Books may be purchased online at http://lilytrilogy.com/index.html

Link between cancerous cells and Trisomy 21 discovered

2011-04-27T14:01:00.000-04:00

Researchers in Boston have uncovered a link between Down syndrome and cancer. People with Down syndrome are LESS likely to have cancerous tumors, and here's why;

The report also for the first time reveals that a molecular switch, an enzyme called DYRK1A, performs a crucial step in assembling the p130-DREAM complex, and thus is novel control point for quiescence and senescence. When DYRK1A is turned on, it acts through p130 to set in motion the assembly of DREAM, which turns off the growth genes and allows cells to depart the growth cycle and become quiescent or senescent.
DYRK1A's ability to turn off cell growth genes may also be involved in the lower-than-normal development of brain neurons in Down syndrome, say the scientists, who are investigating possible new avenues to treating the disorder.
While they tend to have cognitive losses, people with Down syndrome have a markedly lower risk of most types of cancer. DYRK1A is made by a gene on chromosome 21, which is present in three copies instead of the normal two in people with Down syndrome, causing the enzyme to be overproduced. DeCaprio said this abnormal activity could explain both outcomes: DYRKIA-triggered DREAM formation could help suppress cancers by driving them into senescence, and also reduce the generation of brain cells during development.

This discovery can help both the underdevelopment of neurons in the brain of those with Down syndrome, and the unchecked growth of cancerous cells.That's why while those with T21 have fewer brain cells, they also have fewer cancer cells. LIGHT BULB!!!
It seems that a rising tide lifts all boats, if researchers had shown more interest in Down syndrome earlier we may have made greater strides in curing cancer. Instead, we considered pre-natal search-and-destroy to have 'solved' the 'problem' of Down syndrome, suppressing interest in such research for decades, except of course for that of Dr Jerome Lejeune.
Thanks be to God we are not accepting this any longer and are agressively pursuing knowledge over eugenics. Let us pray that a significant treatment for cognitive delays in Down syndrome will precede widespread use of new blood tests for Down syndrome, or it will be too late to save those we love from extinction.

Read the entire article here.

Easter at our house

2011-04-26T17:04:00.002-04:00

At St Mary's we attended 10AM Mass. Christina wore an Easter Bonnet and enjoyed a dainty pink patent leather purse and tiny blue bunny to compliment her spring-like ensemble. She was an angel in church and received Our Lord in Holy Communion.
Mass was followed by the first annual Easter Egg Hunt sponsored by the Knights of Columbus.
Christina.colored a picture about the Resurrection and won a chocolate Cross. Grandpa had another lovely piece of chocolate waiting for her at home, a handmade chocolate bunny from Northport Sweet Shop. He's be buying those for us since our childhood.
The day was warm and sunny in contrast to the week of rain which preceded it, a perfect Easter Sunday full of innocent joy.

He is risen, He is risen indeed,
Alleluia!

Christina's show on Crossroads TV program

2011-04-25T20:22:00.002-04:00

The show which features my daughters and I is now available online at:http://www.ortv.org/crossroads.html. Just click on the date of the show: April 23, 2011, and it should pop up.

We are on at 8:30 after the piece about the Pope John Paul II exhibit at the Knights of Columbus Museum.

Thank you to those who help research Down syndrome

2011-04-25T10:59:00.002-04:00

Thanks to the leadership of NJ Governor Christie's wife, Mary Pat Christie, by promoting "Light the Way" an initiative of Research Down Syndrome to call awareness to Down syndrome research projects in the USA, several "first spouses" of our nation's governor's lit their residences in blue on March 21, World Down syndrome Day. Because of efforts like this we have more funding for research to help people with Down syndrome develop their potential.
Here's a bit about Research Down syndrome:

Research Down Syndrome is a non-profit foundation that supports and funds Down syndrome cognitive research conducted at leading institutions that are studying the basis of the intellectual impairments associated with Down syndrome, including Johns Hopkins University, Stanford University, The University of Arizona, University of California, San Diego, and University of Colorado. Recent scientific advances have revolutionized this field of research, providing for the near term development of targeted medical therapies to treat the cognitive challenges associated with Down syndrome, improving memory, learning and communication, expanding and enhancing life opportunities, for people of all ages with Down syndrome. Research Down Syndrome is a legal corporate entity, and is a 501(c) (3) nonprofit organization designated by the Internal Revenue Code. For more information, please visit www.researchds.org, or contact RDS at info@researchds.org, or 877.863.2121.

Watch their amazing video on Down syndrome research here.

This Saturday, I had the delight ordering decaffeinated Green Tea capsules for Christina from the health food store, knowing that research results in Spain had already proven their effectiveness.Thank you to the Jerome Lejeune Foundation for the first ever effective therapy for improving the cognition and learning. of people with Down syndrome.

In France, Jean Delabar, a researcher at the CNRS in Paris, used another method consisting of acting directly on the Dyrk1A gene on chromosome 21. Because it exists in 3 copies, this gene functions excessively, so the aim was to diminish its activity, which Jean Delabar succeeded in doing by injecting a natural inhibitor in the mice, namely a molecule derived from green tea. In Barcelona, Pr. Mara Dierssen successfully carried out a pre-clinical trial with this molecule on ten adult patients aged 20 to 30. She is now preparing a clinical trial on 100 patients.

Read about the research with Green Tea in Barcelona at this link.
May this be only the beginning of a growing trend!

Crossroads Show to be aired Holy Saturday

2011-04-23T00:29:00.002-04:00

The Archdiocese of Hartford's TV show "Crossroads" will feature my daughters tomorrow on Channel 20 at 10:30 AM CCTV. You can get it across the state of CT.

It focuses on the documentary Gabbi did on her sister with Down syndrome for a film competition and their close relationship. I got in a few words as well!

If you miss it, I can post a link here.

Our new chicks

2011-04-14T20:15:00.000-04:00

Today we bought a dozen one-day-old Rhode Island Red and Aracauna chicks along with a heat lamp to keep them warm, and chick feed. We were asking so many questions, about how to care for them, that we gathered a crowd of farmers who congratulated us on our new adventure. They gave us advice and seemed pleased that we were embarking on a new venture. They asked us if we had a chicken coop to keep them in.

I felt proud as I said "yes", since I've been keeping three hens since the summer. Thanks to the help of my husband and in-laws from El Salvador who had a family farm, we have been running a family farm for a year now.
Now we are really chicken farmers!

Join me for WEGO Health’s Webinar: Navigating Your Health Narrative!

2011-04-13T14:10:00.000-04:00

I just registered for WEGO Health’s exciting new webinar and I wanted to share with everyone.

Here are the particulars:

What: Navigating Your Health Narrative Webinar

Who: Health Activist Panel with Lisa E, Erin B, Jenni P, and Amanda D

When: Thursday April 21^st 8pm EST (the webinar will last one hour)

Where: Sign up here (link) and you’ll get all the details

The webinar is for anyone from seasoned bloggers to blog-readers who want to start their own blog. The webinar will cover the basics of blogging and include more advanced tips and tricks for promoting posts, managing your time, and establishing your blog “voice” and how to raise awareness about your condition through blogging.

By signing up you’ll also have a chance to ask specific questions for the Health Activist panel that will be answered during the live Q&A portion of the webinar. You’ll get access to the archived version of the webinar!

Green Tea proven to help memory and motor skills in those with Down syndrome

2011-04-12T10:00:00.000-04:00

This is amazing news!

The first positive therapeutic trial of a substance we all know, Green Tea, which improves both memory and psychomotor skills, with absolutely NO side effects!!

I am boiling the kettle as I write, I am preparing iced green tea for Christina when she comes home from school! Of course, there is no information on dosage in this article, but I want to get her started in learning to love the somewhat unusual taste.

God bless the wonderful Jerome Lejeune Foundation for sponsoring this breakthrough trial! If it is to be done in the USA, you will find out here. If you want to find out on your own, sign up for the Jerome Lejeune Foundation's email press review, known as Genethique by clicking here.

First promising therapeutic trial for treatment of Down’s syndrome

Le Figaro reports that advances have been made in research on trisomy 21, presented at the second International Conference Jérôme Lejeune (JIJL), held 24-26th March 2011: a first human therapeutic trial demonstrated, in particular, positive effects on memory and psychomotor skills in persons suffering from Down’s syndrome. Press reviews of 21-25/03/11 and of 28-03_01-04/04/11).

In 2009 Jean-Maurice Delabar’s University of Paris Diderot team demonstrated that inhibiting an additional enzyme on chromosome 21 (the enzyme Dyrk1A) improved cognitive symptoms in affected mice. The researchers discovered a natural inhibitor of this enzyme: epigallocatechin gallate, or EGCG, a powerful antioxidant found in green tea. It is a natural substance producing no secondary effects, which can also be administered orally. Prof. Mara Dierssen’s team therefore launched a first clinical trial in Spain in 2010, financed by the Fondation Jérôme Lejeune, at Barcelona's Center for Genomic Regulation. The pilot trial was conducted on 30 patients aged 18 to 26. "Three months after start of treatment, most families had guessed if their trisomic child was receiving EGCG or a placebo, and a month of treatment seemed enough to observe positive effects on memory and psychomotor skills. This effect disappeared with the end of treatment", explains Mara Dierssen. "The encouraging results with EGCG, without any undesirable effects whatsoever, incite us to test other parameters such as dosage and treatment duration", she adds. In the long term, the beneficial effects of the treatment over the course of the illness could be even greater if begun earlier. Meanwhile, Spanish researchers are preparing to launch a vast international study in dozens of hospitals centres.

Thanks to advances in research, specialists say that soon the condition of those suffering from the illness could be somewhat improved. "This was unthinkable 10 years ago", exults Dr. Henri Bléhaut, scientific board member and organizer of the International Conference Jérôme Lejeune; the conference is devoted to research on genetic intellectual disabilities and is also the world's leading professional gathering on Down's syndrome research.

Other approaches were also presented at this second JIJL, demonstrating encouraging results in animals and targeting more specifically memory and learning deficits in persons with Down’s syndrome. Substances such as memantine or fluoxetine, already available over the counter for animal use, could be tested soon on humans. Although not entirely free of secondary effects, they too offer hope in reducing intellectual deficiency in trisomic persons.

Le Figaro (Pierre Kaldy) 05/04/11ac

Cardinalpitcher Albert Pujols has a foundation to help T21 families

2011-04-11T09:26:00.000-04:00

Cardinals first baseman Albert Pujols has a daughter Isabella with Down syndrome. He was featured on 60 minutes last night, where he described his Pujols Family Foundation. which helps the poor in the Dominican Republic, and helps families with a child with Trisomy 21. He plays hard, lives a clean lifestyle, is universally well liked, and is on the road to the Baseball Hall of Fame.
He is a shining example of a sports hero who truly deserving of our children's respect.
Now, doesn't that brighten your Monday morning?

The Arc does a good job of describing Down syndrome on its site

2011-04-09T11:23:00.009-04:00

I often cringe at the dated descriptions of Trisomy 21 on the web, but this page on Down syndrome at the ARC website was so positive, I had to share it.

"Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today. Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future."

You can always tell when someone who is writing about Down syndrome has actually had contact with someone with Down syndrome. They see their strengths and have a sense of hope for their future.
Good for you, ARC!