An urgent appeal for the truth
This piece of news is a bombshell for those of us who love someone with Down syndrome. Right after we rejoiced that the Prenatally Diagnosed Condtions Awareness Act passed last October, the American College of Obstetricians, American College of Medical Genetics, and National Society of Genetic Counselors had a quiet meeting with National Down Syndrome Society and National Down syndrome Congress, at the University of South Carolina to agree on improving information given to parents expecting children with DS. Information has always been the ally of life. We are in favor of doctors and genetic counselors finally receiving some training about the positive aspects of life with Trisomy 21 as Dr Brian Skotko so eloquently expressed in this testimony before Congress at a meeting of the Congressional Down Syndrome Caucus last February.So far, great, right?But the document entitled "Toward Concurrence" didn't stop there. They denied the 90% abortion rate of DS children and that prenatal testing and genetic counseling were done to seek and destroy our precious children with DS. Have you ever seen it for any other reason? Then they took the absurdly unecessary step of saying that NDSS AND NSDC weren't pro-life. No kidding!I am preparing a press release to respond to these groups who have drawn a line in the sand by denying their help to unborn individuals with Trisomy 21 and their famlies (see attached).We MUST get this in front of the media. Please help me.I will do anything I can to help this reach the public before this type of poisonous lie becomes part of our nationalized health care system. Dr Jerome Lejeune, the French scientist who discovered the cause of Trisomy 21 devoted the rest of his life to find a cure for Down syndrome, for as he said, "If we don't find a cure, there won't be any left".Let honor his heroic efforts by declaring the awful truth of the holocaust of 90% of unborn babies with Down syndrome.
Monday, June 29, 2009
My birthday at the beach

Today I celebrated another year of God's gift of life.The day began with Holy Mass continued with a well made luncheon made by my girls, and finished with the fellowship at St Mary's youth group.
In between we spent a few wonderful hours on the ocean in Rhode Island. The sun came out and warmed the girls who were chilly from the water. We had mango ice and soaked up the sun.
God is good.
Wednesday, June 24, 2009
My Sister Alicia May
Written by Nancy Tupper LingIllustrated by Shennen Bersani
Pleasant St. Press 2009
In this view into the daily life of a little girl with Down syndrome, big sister Rachel lovingly describes her six-year-old sister, Alicia May. Alicia May has endearing traits; she bursts through Rachel’s door in the morning with a sunny greeting, she gives great hugs, and she counts the dots on a ladybugs’ backs. Alicia May is good at remembering the names of the neighbors, and loves visiting Rachel’s friend Katie, however, she has temper tantrums when it’s time to leave, which Katie learns to dissipate with a bit of bargaining. Rachel is growing in courage as she learns to defend Alicia May against the cruelty of their schoolmates. She is both proud of Alicia May’s accomplishments and frustrated by her stubbornness.
Sister relationships are complex and beautiful things. When one of the sisters has special needs, the relationship may seem one sided; often the focus is on the special sister, and this is a mixed blessing. The typical sister learns to give more of herself and put up with more than most sisters do, growing emotionally beyond her peers, yet there are days when she runs short of patience for her demanding sister. “My Sister Alicia May” describes this unique relationship with a unique blend of candor and tenderness.
When I read the book to a group of older sisters of little girls with Down syndrome, there were some knowing grins when Alicia May acted up and surprised expressions when author, Nancy Tupper Ling acknowledged their ‘special ness’ as well. As a mother to an Alicia May and her two big sisters, I say it is long overdue praise for the big sisters.
This book will make those who love someone with Down syndrome alternately well up with tears and laugh as they relate to Rachel’s authentic description of her sister. Shennen Bersani’s lavish and vivid illustrations alone are worth the price of the book. Her realistic drawings of the girls portray with tenderness the unique character of our much-loved children.
This book is a must for anyone who loves children with ‘designer genes’.
Review by Leticia Velasquez
Catholic Media Review
This book is available from Pleasant Street Press
Tuesday, June 23, 2009
Vaccine Safety to be re-examined by CDC
My pediatrician and I were discussing vaccines. This happens every time I switch practices; I get 'the talk' about not vaccinating my children. The reason I don't is twofold; aborted fetal cell lines in vaccines, and the fact that Isabella contracted Whooping Cough from the old DTP vaccine (discontinued by the way). Christina is already delicate without risking her health to side effects of vaccines.
Here is a link to Dr William Sear's blog where he discusses a potential new study by the CDC into the claims that vaccines cause autism. I will be watching this closely.
For more information about the morality of those vaccines which use fetal cell lines go to Children of God for Life.
Here is a link to Dr William Sear's blog where he discusses a potential new study by the CDC into the claims that vaccines cause autism. I will be watching this closely.
For more information about the morality of those vaccines which use fetal cell lines go to Children of God for Life.
Saturday, June 20, 2009
Feasts of the Sacred and Immaculate Hearts
I spent these days at a pro-life conference with Fr Thomas Euteneuer of Human Life International, hearing him explain the crucial role played by prayer in the battle against abortion, and with my mother who is battling cancer.I realized once again, how dependent I am on the Sacred Heart of Jesus and the Immaculate Heart of Mary.
May they continue to protect and guide our family and yours.
May our dedicated prayers bring about the Triumph of the Immaculate Heart in our lifetime.
Tune into AirMaria for beautiful homilies on the Sacred and Immaculate hears from Fr Angelo and Fr Igantius at the Marian Friary of Our Lady of Guadalupe.
Thursday, June 18, 2009
Monday, June 15, 2009
How the International Down Syndrome Coalition is changing hearts
My friend Diane from IDSC has given me permission to share from her email today. I have been blogging to save lives of babies in danger of abortion because they have Down syndrome for three years. I think I have a handle on how horrible the thinking is about our beloved children, yet Diane's email today left me breathless, and reminded me just how important our internet presence is. We willnever know how many lives we have saved until we meet in heaven. But keep up the good work, Diane, you can see that God has a lot more work for you out there.
Finally, we wanted to share a little information with you. We like to check to see what people will type in their google search engine to find us. We have been surprised to find out that many who are considering abortion are finding us. They are also exiting out of the site on the great pro life resources that we have available for them. We thought you may want to see what some of the words they type into the search engine are. I have copied these exactly as they are, and they are a small sample:
choosing to terminate a downs baby
is down syndrome incompatible with life
do children suffer from Down syndrome
parents starving baby down syndrome
ending pregnancy for down syndrome
choosing to terminate a pregnancy for down syndrome
option to terminate the life of a baby with down syndrome
life for the suffer of down syndrome
our baby has down syndrome
federal law concerning "down syndrome" (I have no clue what this would mean.)
Please continue to keep these families in your thoughts and prayers. We hope that any information we have to offere will help them as they make their decision for their child. We are so glad that the IDSC is coming up so often in search engines when they are looking for information concerning abortion of their child who happens to have Down syndrome. These words can take your breath away. Real people, needing real solutions are finding us!
Thanks to all of you helping to get the word out there, people are finding us!
Finally, we wanted to share a little information with you. We like to check to see what people will type in their google search engine to find us. We have been surprised to find out that many who are considering abortion are finding us. They are also exiting out of the site on the great pro life resources that we have available for them. We thought you may want to see what some of the words they type into the search engine are. I have copied these exactly as they are, and they are a small sample:
choosing to terminate a downs baby
is down syndrome incompatible with life
do children suffer from Down syndrome
parents starving baby down syndrome
ending pregnancy for down syndrome
choosing to terminate a pregnancy for down syndrome
option to terminate the life of a baby with down syndrome
life for the suffer of down syndrome
our baby has down syndrome
federal law concerning "down syndrome" (I have no clue what this would mean.)
Please continue to keep these families in your thoughts and prayers. We hope that any information we have to offere will help them as they make their decision for their child. We are so glad that the IDSC is coming up so often in search engines when they are looking for information concerning abortion of their child who happens to have Down syndrome. These words can take your breath away. Real people, needing real solutions are finding us!
Thanks to all of you helping to get the word out there, people are finding us!
Sunday, June 14, 2009
Friday, June 12, 2009
NDSS new public awarenesscampaign; My Great Story
My Great Story!My Great Story seeks to honor and celebrate the great stories of the 400,000 Americans living with Down syndrome by showcasing these stories in a beautiful online storybook.
This book will feature inspirational stories about work, school, friends, family, hobbies, travel, the NDSS Buddy Walk® program and many other things.
If you have Down syndrome, we want to hear your great story! We want to learn about your achievements, dreams, aspirations, successes, and anything else about yourself that you want to share.
If you have a great story about someone you know who has Down syndrome, tell us! We want to know how he/she has inspired you. You can tell a story about your friend, family member, colleague, student, patient, neighbor, etc
Please encourage everyone you know to get involved by passing along this email or web address below!
www.ndss.org/stories
The My Great Story website was created by York & Chapel
NDSS has taken it one step further and turned two great stories into a national public service announcement (PSA), featuring the great stories of Sujeet Desai, The Traveler and Sara Wolff, The Public Speaker, featured below.
These PSA’s will be featured in national and local media outlets across the country this fall, as well as high profile websites.
These dynamic print ads were shot by renowned photographer, Zachary Scott.
The ad creative was developed pro-bono by Pedone Media.
Click here to watch the ‘behind the scene’s’ video from the photo shoot.
Click here to read the story of Sujeet Desai, The Traveler
Thursday, June 11, 2009
Mom
We are praying more intently than ever for Mom, who has widespread late stage cancer.
Please join us.
Please join us.
Monday, June 8, 2009
Tour of Shrine of Our Lady of Guadalupe in La Crosse WI
This is the latest site for a Friary of the Franciscans of the Immaculate.
A Meditation on Jesus in the Blessed Sacrament

There, where my dear Jesus dwells,
where He is enthroned in the tabernacle,
there I wish to be kneeling continually.
There, I wish to pray unceasingly:
Jesus, I love You deeply.
Hidden Love, I adore You.
Abandoned Love, I adore You.
Despised Love, I adore You.
Love trampled underfoot, I adore You.
Infinite Love, dying on the Cross for us, I adore You.
My dear Lord and Savior,
make it be that I am all love and expiation
toward the Most Blessed Sacrament
in the heart of Your most loving Mother Mary.
Amen.
where He is enthroned in the tabernacle,
there I wish to be kneeling continually.
There, I wish to pray unceasingly:
Jesus, I love You deeply.
Hidden Love, I adore You.
Abandoned Love, I adore You.
Despised Love, I adore You.
Love trampled underfoot, I adore You.
Infinite Love, dying on the Cross for us, I adore You.
My dear Lord and Savior,
make it be that I am all love and expiation
toward the Most Blessed Sacrament
in the heart of Your most loving Mother Mary.
Amen.
by Maria Stang
(a woman who persevered in her faith under the cruel
Communist atheistic rule for many years and who taught and brought the faith to many,
keeping the love of the Lord in the most Blessed Sacrament alive)
(a woman who persevered in her faith under the cruel
Communist atheistic rule for many years and who taught and brought the faith to many,
keeping the love of the Lord in the most Blessed Sacrament alive)
Friday, June 5, 2009
The prayer of a little saint
We have been dealing with the news that my mother has an operable tumor which is most likely malignant. It has been terrifying, yet moments of grace have kept us going. Like when I hear from friends and strangers who are praying for Mom, or the look of compassion on my pastor's face when I told him. He lost his mother a few months ago.Yesterday God gave us another moment of grace.
I was outdoors with Christin
a, trying to absorb the gravity of the bad news I had just received by phone: the surgeon said that Mom's tumor was probably malignant. I was trying to move beyond the paralysis of fear and find the words to pray about it. I was to pray silently as I walked around the yard, finally sitting down on the stoop in the exhaustion of grief.
a, trying to absorb the gravity of the bad news I had just received by phone: the surgeon said that Mom's tumor was probably malignant. I was trying to move beyond the paralysis of fear and find the words to pray about it. I was to pray silently as I walked around the yard, finally sitting down on the stoop in the exhaustion of grief. Christina got up, saying "Church", and walked over to the statue of Our Lady of Grace in front of the house. She patted the statue on the shoulder, then stepped back, crouched down and made the Sign of the Cross alone for the first time. Her little hands clasped tightly, she began to pray. For five minutes, Christina mentioned all of our family members, including my mother as we do in our nighttime prayers. Her little face was a model of concentration and at one point she closed her eyes. It was obvious that she was praying, not imitating our actions, since we pray indoors and typically
at her bedside. She has never seen us pray in front of this particular statue of Our Lady.
at her bedside. She has never seen us pray in front of this particular statue of Our Lady. When Christina finished her prayers, she made the Sign of the Cross, and again reached out to touch the shoulder of the statue of Our Lady, and when she turned to leave, patted her head affectionately.
I immediately called Mom and Dad to tell them about the prayers of our little saint. They were moved and uplifted by this gesture of love and faith that was so unexpected. When Christina was baptized,
Fr McCartney said, "sometimes I think that people with Down syndrome feel sorry for us, because we can't see what they see". Yesterday, Christina proved that she could pray with words when her mother couldn't. I know God heard us both, but I can't help feeling that the prayers of such innocent children carry a special weight with He who asked the little children to come to Him.
Fr McCartney said, "sometimes I think that people with Down syndrome feel sorry for us, because we can't see what they see". Yesterday, Christina proved that she could pray with words when her mother couldn't. I know God heard us both, but I can't help feeling that the prayers of such innocent children carry a special weight with He who asked the little children to come to Him. May Our Lady and Jesus hear and answer her heartfelt prayers for "Gramma".
Thursday, June 4, 2009
Isabella is 12, Gabriela is sweet sixteen
Friday, May 29, was a whirlwind day, I was subbing at Bellas school, then we rushed home with her best friend Mary to change and go out to enjoy "Night at the Museum 2". We completed the celebration with pizza and ice cream sundaes before packing the car to drive down to visit Grandma and Grandpa.
On Saturday, we attended a Down syndrome activities day at St Anthony's High School with our Long Island friends. Afterwards I took Christina to a pro-life youth conference at Nassau Community College, where she enjoyed the food, and I tried to enjoy the speeches. We stopped at our friend's home for tea, then home for a big roast beef dinner cooked by Grandpa.
On June 2, after school, Gabbi invited two friends to a shopping trip to spend her gift from her grandparents and then to come home and share a meal and her birthday cake. The lively conversations lasted past midnight,
They are such beautiful, intelligent young ladies, with such vivacious senses of humor. I am truly blessed to be their mother. May God grant them a grace-filled joyful, healthy year.
On Saturday, we attended a Down syndrome activities day at St Anthony's High School with our Long Island friends. Afterwards I took Christina to a pro-life youth conference at Nassau Community College, where she enjoyed the food, and I tried to enjoy the speeches. We stopped at our friend's home for tea, then home for a big roast beef dinner cooked by Grandpa. Sunday, after Mass in the parish I grew up in, St Philip Neri,
Northport, I walked the girls home down Main Street, the same path I used to take to daily Mass the summers when I was a teenager. I showed them the bushes where I used to pick flowers to put in front of the Blessed Mother's statue, when I felt that I had a religious vocation at 15. Such tender memories were great to share with my girls.
Northport, I walked the girls home down Main Street, the same path I used to take to daily Mass the summers when I was a teenager. I showed them the bushes where I used to pick flowers to put in front of the Blessed Mother's statue, when I felt that I had a religious vocation at 15. Such tender memories were great to share with my girls. We took my brother Rob's two boys out with Christina to the local farm to visit the animals, something we both did as children. Here is a photo of Bella looking pensive at the farm.
There we had some family time and a great big Baskin Robbins CHOCOLATE cake for both Bella and Gabbi w
ho turned 16 last Tuesday. Please keep my mother Eleanor in your prayers, she is in pain and has surgery scheduled.
ho turned 16 last Tuesday. Please keep my mother Eleanor in your prayers, she is in pain and has surgery scheduled.
On June 2, after school, Gabbi invited two friends to a shopping trip to spend her gift from her grandparents and then to come home and share a meal and her birthday cake. The lively conversations lasted past midnight,They are such beautiful, intelligent young ladies, with such vivacious senses of humor. I am truly blessed to be their mother. May God grant them a grace-filled joyful, healthy year.
Wednesday, June 3, 2009
Friendly Blogger Award

My friend Elizabeth at The Divine Gift of Motherhood gave me the Friendly Blogger Award. She gave me credit for helping her get started in blogging. If so, I can take a bow for helping to raise the quality of writing in the blogosphere. She is a dear friend, outstanding mother and superb writer.
Thanks, from Tigger (my sixth grade nickname for my boisterously happy personality) Too bad you can't see me sing "The Wonderful Thing about Tiggers"!
Tuesday, June 2, 2009
Among Women nominated for Catholic New Media Awards
My friend Pat Gohn's podcast Among Women was nominated for several categories at the Catholic New Media Awards(formerly Catholic Blog Awards). See my review here, then go vote for her!
Thursday, May 28, 2009
Small Successes
1. I welcomed my sister and brother-in-law who just emigrated from El Salvador into our home. We got to know one another, and enjoy the natural beauty of our neighborhood. Here is Francisco with his brother Manuel fishing in the river. We hope Manuel and Milagro will be living in our home, while I teach them English this summer. We might even teach them how to drive, with Gabbi, if I feel brave enough!

2. We brought up a large part of my perennial garden from Long Island, and transplanted it here on our new piece of God's country. I hated to admit feeling nostalgic for my flowers, I tried to be brave and admire everyone else's gardens, but I guess if you are a true gardener, it becomes part of you.
I'm starting to feel like Tasha Tudor.
3. We celebrated Memorial Day in our new home with the solemnity it deserves, at a field mass at the parish cemetery and downtown with a parade. So many times, we forget the meaning of the first long weekend of summer, it was good to remember those who have given all.
See the rest of the posts at Faith and Family Live
Lest we forget
In Flanders Fields
By: Lieutenant Colonel John McCrae, MD
(1872-1918) Canadian Army
In Flanders Fields the poppies blow
Between the crosses row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.
We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved,
and now we lie In Flanders fields.
Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep,
though poppies grow
On a positively luminous spring afternoon, the tiny parade in Sprauge wound it's way through the old factory town by the river, while I watched under shady tree near the Veteran's Memorial. It was gratifying to see so many of my new friends in the parade, Christina's friend Tommy(with T21) with the cub scouts,Gabbi's, and Bella's friends on the sidelines, and my pastor, Fr Tito to give the invocation. In only 9 months, we have become part of this tight knit community of faithful Catholics, and Connecticut feels like home.
Here are two of the politicians who spoke at the ceremony:
Here are two of the politicians who spoke at the ceremony:
Connecticut Congressman Joe Courtney, a Democrat, has a 05 pro-life voting record. His speech received moderate applause at the Sprauge Memorial Day service. Fr Tito, my pastor, who read Alex De Touqueville's quote, "America is great, because America is good, when American ceases to be good, it will no longer be great", received much stronger applause. We are in the conservative area of a liberal state.
Connecticut State Represenative Chris Coutu (R dist 47)on the other hand is a Catholic and votes like one. I met him one Saturday in September during his campaign, and he assured me he would think about voting like a Catholic. His HS teacher, Paul Tetrault, whom I met at the polling place, where he held pro-life signs, assured me that he would, or Chris would have to answer to him. He has a distinguished record of military and community service including volunteering in the Special Olympics(unlike our President who only uses it as the butt of jokes).
He voted against the terrible S899 bill legalizing gay marriage in Connecticut, and forcing homosexual agenda on the state's schoolchildren.
We salute you, veteran and proud Catholic in a cowardly Catholic state, Rep Chris Coutu!
Wednesday, May 27, 2009
St Philip Neri
I have a special affection for St Philip Neri, the name of the parish where I made my First Holy Communion and Confirmation. I always knew about his sense of humor but never heard about his experience of the Holy Spirit.
Please don't forget to pray the Pentecost Novena with me for my mother.
"He was twenty-nine years old at the time, and as the feast of Pentecost was approaching, Philip who had always had a special devotion to the Holy Spirit, was praying with extreme earnestness for his gifts and graces, when he seemed to see a globe of fire which entered his mouth and sank down into his heart. At the same time he was pervaded by a fire of love which seemed to be a positive physical heat, so that he had to throw himself on the ground and bare his breast to cool it. When he rose he was seized with a violent trembling, accompanied by an extraordinary sense of joy, and putting his hand to his heart, he felt there a swelling as big as a man's fist. After his death it was discovered that the first two of the false ribs were broken, and the broken ends thrust outwards, never having rejoined or return to the normal position during he fifty remaining years of Philip's life." 9
Fr. V.J. Matthews, Saint Philip Neri (Tan Books: 1984), 9.
Please don't forget to pray the Pentecost Novena with me for my mother.
"He was twenty-nine years old at the time, and as the feast of Pentecost was approaching, Philip who had always had a special devotion to the Holy Spirit, was praying with extreme earnestness for his gifts and graces, when he seemed to see a globe of fire which entered his mouth and sank down into his heart. At the same time he was pervaded by a fire of love which seemed to be a positive physical heat, so that he had to throw himself on the ground and bare his breast to cool it. When he rose he was seized with a violent trembling, accompanied by an extraordinary sense of joy, and putting his hand to his heart, he felt there a swelling as big as a man's fist. After his death it was discovered that the first two of the false ribs were broken, and the broken ends thrust outwards, never having rejoined or return to the normal position during he fifty remaining years of Philip's life." 9
Fr. V.J. Matthews, Saint Philip Neri (Tan Books: 1984), 9.
Tuesday, May 26, 2009
Pope2You
I received a message from Fr Paolo Padrini asking me to share Pope2 You. Since I attended the Papal Youth Rally last April, and watched the magic of the Holy Father's interaction with youth in person, I have longed for a way to recapture the magic of their special bond. Pope2You is a vehicle for the Holy Father to keep in touch with the youth of the Church between World Youth Days and other youth gatherings.
"The new media of Facebook, the iPhone, YouTube and Wikipedia are increasingly becoming the new forum where the Catholic Church dialogues with the world. As Pope Benedict XVI noted in his message for the 43rd annual World Communications Day, the Internet is a place where young people need to develop true friendships which spring from an encounter with the Risen Christ. With this awareness and the courage to enter into the world of social networks, the project Pope2You was started with the idea of helping these networks become authentic places of friendship and true dialogue.Pope2You was created in collaboration with the Pontifical Council for Social Communications as an experiment in providing a new forum and channel of communication using the latest platforms. The Pope2You website provides a new way for Pope Benedict XVI to reach out to young people around the world. The site can be viewed in five languages and allows young people to learn more about the Church and Benedict XVI through his own writings, starting with the message for the 43rd World Communications Day. While the site aims to generate the interest of young people, it is also meant for people of all ages. It features news on the Catholic Church and details on the pastoral activities of Benedict XVI incorporating content from the Vatican’s YouTube channel. At the same time, a new application for the iPhone and iPod Touch has been created by the Catholic news agency H2Onews, with plans to add other mobile platforms later.Pope2You also provides a gateway to a parallel world in Facebook with an application where you can create and send to your friends virtual postcards with the Pope’s own words, greetings and excerpts of his writings staring with this year’s World Communications Day message. Also, with the help of the Media Office of the Italian Bishops’ Conference, a special area has been created along the lines of a WIKI with suggestions on how to put into pastoral practice the Pope’s 2009 Message. These new applications highlight the latest example of the Church reaching out in new ways in the world of social networks – a forum where the Church can meet new people, make new friends, dialogue and offer solidarity."
"The new media of Facebook, the iPhone, YouTube and Wikipedia are increasingly becoming the new forum where the Catholic Church dialogues with the world. As Pope Benedict XVI noted in his message for the 43rd annual World Communications Day, the Internet is a place where young people need to develop true friendships which spring from an encounter with the Risen Christ. With this awareness and the courage to enter into the world of social networks, the project Pope2You was started with the idea of helping these networks become authentic places of friendship and true dialogue.Pope2You was created in collaboration with the Pontifical Council for Social Communications as an experiment in providing a new forum and channel of communication using the latest platforms. The Pope2You website provides a new way for Pope Benedict XVI to reach out to young people around the world. The site can be viewed in five languages and allows young people to learn more about the Church and Benedict XVI through his own writings, starting with the message for the 43rd World Communications Day. While the site aims to generate the interest of young people, it is also meant for people of all ages. It features news on the Catholic Church and details on the pastoral activities of Benedict XVI incorporating content from the Vatican’s YouTube channel. At the same time, a new application for the iPhone and iPod Touch has been created by the Catholic news agency H2Onews, with plans to add other mobile platforms later.Pope2You also provides a gateway to a parallel world in Facebook with an application where you can create and send to your friends virtual postcards with the Pope’s own words, greetings and excerpts of his writings staring with this year’s World Communications Day message. Also, with the help of the Media Office of the Italian Bishops’ Conference, a special area has been created along the lines of a WIKI with suggestions on how to put into pastoral practice the Pope’s 2009 Message. These new applications highlight the latest example of the Church reaching out in new ways in the world of social networks – a forum where the Church can meet new people, make new friends, dialogue and offer solidarity."
Monday, May 25, 2009
The consequences of playing hookey
Father Norton woke up Sunday morning and realizing it was an exceptionally
beautiful and sunny early spring day, decided he just had to play golf.
So... he told the Associate Pastor that he was feeling sick
and persuaded him to say Mass for him that day.
As soon as the Associate Pastor left the room, Father Norton
headed out of town to a golf course about forty miles away.
This way he knew he wouldn't accidentally meet anyone he knew from his parish.
Setting up on the first tee, he was alone. After all, it was Sunday morning and everyone else was in church!
At about this time, Saint Peter leaned over to the Lord while looking down from the heavens and exclaimed,
"You're not going to let him get away with this, are you?"
The Lord sighed, and said, "No, I guess not."
Just then Father Norton hit the ball and it shot straight towards the pin,
dropping just short of it, rolled up and fell into the hole.
IT WAS A 420 YARD HOLE IN ONE!
St. Peter was astonished. He looked at the Lord and asked, "Why did you let him do that?"
The Lord smiled and replied, "Who's he going to tell?"
beautiful and sunny early spring day, decided he just had to play golf.
So... he told the Associate Pastor that he was feeling sick
and persuaded him to say Mass for him that day.
As soon as the Associate Pastor left the room, Father Norton
headed out of town to a golf course about forty miles away.
This way he knew he wouldn't accidentally meet anyone he knew from his parish.
Setting up on the first tee, he was alone. After all, it was Sunday morning and everyone else was in church!
At about this time, Saint Peter leaned over to the Lord while looking down from the heavens and exclaimed,
"You're not going to let him get away with this, are you?"
The Lord sighed, and said, "No, I guess not."
Just then Father Norton hit the ball and it shot straight towards the pin,
dropping just short of it, rolled up and fell into the hole.
IT WAS A 420 YARD HOLE IN ONE!
St. Peter was astonished. He looked at the Lord and asked, "Why did you let him do that?"
The Lord smiled and replied, "Who's he going to tell?"
Sunday, May 24, 2009
Susan Boyle does it again!
This little lady is blooming like a rose, isn't she beautiful?!
Read about her advance (was anyone surprised?)to the finals of "Britain's Got Talent" and the more amazing apology of the incorrigible Simon Cowell at OMG. "After her performance on Sunday, Cowell was moved to apologize to Boyle, saying she had been poorly underestimated.
"You know what, I just want to apologize because of the way we treated you before you sang the first time," he said. "You made me and everyone else look very stupid and I'm very happy for you, very proud for you."
God is with you Susan, you are setting the world on it's ear!
Read about her advance (was anyone surprised?)to the finals of "Britain's Got Talent" and the more amazing apology of the incorrigible Simon Cowell at OMG. "After her performance on Sunday, Cowell was moved to apologize to Boyle, saying she had been poorly underestimated.
"You know what, I just want to apologize because of the way we treated you before you sang the first time," he said. "You made me and everyone else look very stupid and I'm very happy for you, very proud for you."
God is with you Susan, you are setting the world on it's ear!
Campfire Rosary
Tonight was a partly cloudy day with vivid green leaves and interesting skies. My husband's family came to help us plant some of our perennials from our former home into the weed mass that was our garden. Now, many of the weeds (by no means all) are replaced by old friends: Echinachea, Hydrangea bushes, Tiger lilies, Siberian Iris, Archangel, Black-eyed Susans, Forsythia bushes, Laurel, and Hollyhocks (a velvety deep red).We were tired but grateful when, after dinner we were reluctant to give up the outdoors simply because it was dusk. An alluring sunset inspired us to do a quick search for firewood, and set up chairs. Soon we had a circle of twelve chairs around a roaring campfire, and talk led to praise songs then Marian hymns, which led to a rosary in Spanish for my father-in-law and my mother. What comfort we felt in the cool spring darkness, surrounded by the songs of tree frogs, crickets and the brook, reciting the ancient prayers to Our Blessed Mother, who hears her children's calls for the peace and healing of their loved ones. Who but her children can invoke her name and be instantly wrapped in her mantle of love?
If you have never done so, treat your family to a campfire rosary this summer.
Thursday, May 21, 2009
Please pray for my mother
Yesterday my mother was admitted to the hospital for suspected gallbladder inflammation. Now, after an MRI, it appears much worse. She may have cancer, and the word sends a cold shock of fear into your system when it's said with reference to someone you love.
Please pray for her, her name is Eleanor Crafa.
Please join us in a Pentecost Novena, starting today.
UPDATE 5/22
Mom is home from the hospital resting. She did not have surgery. She will have further testing in Manhattan with a specialist renowned in this field.
Your continued prayers are appreciated.
Please pray for her, her name is Eleanor Crafa.
Please join us in a Pentecost Novena, starting today.
UPDATE 5/22
Mom is home from the hospital resting. She did not have surgery. She will have further testing in Manhattan with a specialist renowned in this field.
Your continued prayers are appreciated.
Monday, May 18, 2009
It's only stuff
The silence on this blog is a result of a minor flood in our house the day after Mother's Day. Our washing machine decided it wanted to make a swimming pool in the basement, two floors down, and left four floors, kitchen countertops, and lots of ceiling space in it's wake. Thankfully I was home in time to mop up water making waves around my ankles in the kitchen while calling Serve Pro. They were wonderful, and between them and the washing machine insurance company, I'm getting help to clean up the mess, as well as replacement floors, ceilings, etc. But meanwhile, things are a bit rough around here, and the stress is getting to me.
Did I mention we're in the middle of sending the book to the publisher who will be deciding whether to publish us?
So, those of you who work for God know that this is a sign that the old man downstairs is not pleased. We hope to save lives and souls with the beautiful stories in Be Not Afraid. So ol' scratch hassles and fusses and tries to make me blow my temper.
Poor thing! Didn't he read the Book of Revelation?
He loses!
Did I mention we're in the middle of sending the book to the publisher who will be deciding whether to publish us?
So, those of you who work for God know that this is a sign that the old man downstairs is not pleased. We hope to save lives and souls with the beautiful stories in Be Not Afraid. So ol' scratch hassles and fusses and tries to make me blow my temper.
Poor thing! Didn't he read the Book of Revelation?
He loses!
A new blog to enjoy
My friend Julie has a blog DRVC Catholic which highlights some of the beautiful churches on Long Island. Take a look at Sacred Hearts of Jesus and Mary in Southampton.
Monday, May 11, 2009
Her mother's daughter
Sometimes the expression, "you're just like your mother" can be used as less than a compliment, but when I tell you about my mother's day gift, I mean it as high praise.
Growing up we used to make spiritual bouquets for the sick, or for someone like the bishop (what else could we possibly give him?). We adopted this custom when funds were low in our home, which seems to be the case in many homes.
So this morning, as I sat in my easy chair waiting for my morning coffee to energize my tired body, Gabbi came up to me with a small gift bag. On her class trip to Boston, she bought me a hyacinth votive candle with her spending money and wrote out this card with a spiritual bouquet.
I was thrilled, never have I needed one more. Right now, I am trying to make enough money to justify calling myself a full time Catholic writer, beginning by sending my book manuscript off to a Catholic publisher (please join me in prayer for it to be accepted). I know God is calling me to this vocation, yet I am struggling to trust Him to meet my family's financial needs while I give my talents to His service to spead the Gospel of Life.
We spent the morning at Mass, enjoying the lovely innocence of the First Communion children who were receiving their scapulars, and followed this with brunch in a country inn.
Growing up we used to make spiritual bouquets for the sick, or for someone like the bishop (what else could we possibly give him?). We adopted this custom when funds were low in our home, which seems to be the case in many homes.
So this morning, as I sat in my easy chair waiting for my morning coffee to energize my tired body, Gabbi came up to me with a small gift bag. On her class trip to Boston, she bought me a hyacinth votive candle with her spending money and wrote out this card with a spiritual bouquet.
I was thrilled, never have I needed one more. Right now, I am trying to make enough money to justify calling myself a full time Catholic writer, beginning by sending my book manuscript off to a Catholic publisher (please join me in prayer for it to be accepted). I know God is calling me to this vocation, yet I am struggling to trust Him to meet my family's financial needs while I give my talents to His service to spead the Gospel of Life.
We spent the morning at Mass, enjoying the lovely innocence of the First Communion children who were receiving their scapulars, and followed this with brunch in a country inn.
Saturday, May 9, 2009
May Feelings II
Remember the incredible video last of year, May Feelings which skyrocketed to the top of You Tube? Well they made another, called May Feelings II. Enjoy.
Friday, May 8, 2009
A children's book for Mother's Day: Let me Hold You Longer
Karen Kingsbury is the mother of six children. Her book can be purchased on her website.
Thursday, May 7, 2009
I'm on the "Among Women" Podcast

Thanks to Pat Gohn, whom I mention meeting for lunch here, with columnist Patrice Fagnant-McArthur, I am on my first podcast at Among Women.
Wednesday, May 6, 2009
My friend Therese is up for a Cannonball Award
She is an inspiring blogger and wonderful Catholic mom of special needs children. Her blog Aussie Coffee Shop is underappreciated and you can vote for her blog every day right here.
The courage of some mothers really inspire me
I am gaining new followers on Twitter every day, and it fascinates me to learn about each one. One pro-life mom of 5, Elizabeth Esther is a great blogger, and posted this wonderful story about a mom who just wouln't give up on Emmanuelle. These difficult times call for true pro-life heroism. She wrote, "We were adamant that God’s will be done and we knew ending our baby’s life was not our decision. We were told we were naïve, foolish, selfish, thoughtless-“do you think this baby wants to live, you have no idea what this will do to your family.”
Yet she carried her baby to term, and two years later she is surpassing all expectations.
Happy Mother's Day to all you brave women out there who don't listen to doomsday doctors, who put your own life on the line to save your baby.
There is a special reward awaiting you in heaven.
Yet she carried her baby to term, and two years later she is surpassing all expectations.
Happy Mother's Day to all you brave women out there who don't listen to doomsday doctors, who put your own life on the line to save your baby.
There is a special reward awaiting you in heaven.
Tuesday, May 5, 2009
Submit your photos for Times Square Montage
from NDSS
Celebrate the 15th Anniversary of the Buddy Walk® by entering the Times Square Video Contest. The video, which showcases individuals with Down syndrome from all over the world, will air on a jumbo screen in the heart of Times Square on September 26, 2009 at 10:30 a.m. The New York City Buddy Walk will immediately follow the video presentation at the Great Hill in Central Park.
Each year, NDSS receives thousands of photo submissions for the Times Square Video Contest. Because the Buddy Walk promotes acceptance and inclusion of individuals with Down syndrome, the winning photographs feature children, teens and adults with Down syndrome working, playing and learning with friends and family.
For more information, or to submit a photo, please click here. The deadline for submitting photos is July 15, 2009.
ONE photo per individual can be submitted to the contest. Please note that this is different than in the past. If you send more than one photo, NDSS will only use the first submission.
Winners will be contacted by a representative from NDSS via email starting the week of August 3, 2009. You will not be contacted if your photo is not selected. Photographs will not be returned.
Click here to view the 2008 Times Square Video.
For further questions about the contest, contact me at timessquarevideo@ndss.org.
Celebrate the 15th Anniversary of the Buddy Walk® by entering the Times Square Video Contest. The video, which showcases individuals with Down syndrome from all over the world, will air on a jumbo screen in the heart of Times Square on September 26, 2009 at 10:30 a.m. The New York City Buddy Walk will immediately follow the video presentation at the Great Hill in Central Park.
Each year, NDSS receives thousands of photo submissions for the Times Square Video Contest. Because the Buddy Walk promotes acceptance and inclusion of individuals with Down syndrome, the winning photographs feature children, teens and adults with Down syndrome working, playing and learning with friends and family.
For more information, or to submit a photo, please click here. The deadline for submitting photos is July 15, 2009.
ONE photo per individual can be submitted to the contest. Please note that this is different than in the past. If you send more than one photo, NDSS will only use the first submission.
Winners will be contacted by a representative from NDSS via email starting the week of August 3, 2009. You will not be contacted if your photo is not selected. Photographs will not be returned.
Click here to view the 2008 Times Square Video.
For further questions about the contest, contact me at timessquarevideo@ndss.org.
Pope Paul VI on Mary: Mense Maio
Throughout this month of May, let us offer our pleas to the Mother of God with greater devotion and confidence, so that we may obtain her favor and her blessings. Even if the grave sins of men provoke God’s justice and merit His just punishments, we must not forget the he is “the Father of mercies and the God of all comfort,” that He has appointed Mary most holy as the generous steward of His merciful gifts.
Monday, May 4, 2009
Special Graces in the month of May
from Mary Vitamin
"One May St. Pio of Pietrelcina wrote his spiritual father, Now at last the month of our beautiful Mother has returned! This dear Mother continues to give me her fond, motherly attention, especially during this month."
Father Stefano Manelli, FI, Devotion to Our Lady, (Academy of the Immaculate), 159.
"One May St. Pio of Pietrelcina wrote his spiritual father, Now at last the month of our beautiful Mother has returned! This dear Mother continues to give me her fond, motherly attention, especially during this month."
Father Stefano Manelli, FI, Devotion to Our Lady, (Academy of the Immaculate), 159.
Sunday, May 3, 2009
Regina Caeli (replaces Angelus Prayer in Easter season)
Queen of Heaven, rejoice, alleluia.
For He whom you did merit to bear, alleluia.
Has risen, as he said, alleluia.
Pray for us to God, alleluia.
Rejoice and be glad, O Virgin Mary, alleluia.
For the Lord has truly risen, alleluia.
Let us pray. O God, who gave joy to the world through the resurrection of Thy Son, our Lord Jesus Christ, grant we beseech Thee, that through the intercession of the Virgin Mary, His Mother, we may obtain the joys of everlasting life.
Through the same Christ our Lord.
Amen.
For He whom you did merit to bear, alleluia.
Has risen, as he said, alleluia.
Pray for us to God, alleluia.
Rejoice and be glad, O Virgin Mary, alleluia.
For the Lord has truly risen, alleluia.
Let us pray. O God, who gave joy to the world through the resurrection of Thy Son, our Lord Jesus Christ, grant we beseech Thee, that through the intercession of the Virgin Mary, His Mother, we may obtain the joys of everlasting life.
Through the same Christ our Lord.
Amen.
He's baaaaack!
Who's back? Why Father Corapi, of course!I miss his booming voice and the thrill that now that I live in a more traditional diocese, I may be able to come and hear him speak.
He was exhausted and malnourished, and a long rest did him a world of good. Now, he's back on the road, ready to challenge and inspire us with his booming voice and take no prisoners style.
Welcome back, Father, you were missed!
Read about it in the National Catholic Register.
Here's a Marian Meditation from his website
As we enter another month of May we can’t help but turn our thoughts to Mary, the Mother of the Lord and our dear spiritual Mother. For whatever reason some people have difficulty relating to the Blessed Mother. On the other hand, tens of millions of us love her dearly and can’t understand why anyone wouldn’t. I have always thought, “If she’s good enough for Jesus, She’s good enough for you!”We find ourselves caught in a violent spiritual war today. We need all of the help we can get. One of the greatest aids God has given us is the gift of His own Mother. We are foolhardy indeed if we refuse or fail to avail ourselves of this powerful gift.
Pray the Rosary every day. If we do not do this I’m afraid we’ll bear much of the responsibility for the state of the world—which is catastrophic. Can God bless a country that formally and legally embraces such human rights abuses as the genocide of abortion? Can God look fondly on a world that sanctions things such as fetal stem cell research, human cloning, and gay marriage?
These things constitute an assault on life itself, yet the average person is apparently too dull witted or morally blind to see this. At decisive times in human history, when all seemed dark, desperate, and nearly lost, the Church turned to Mary, the Mother of the Lord and our Mother, the Woman Clothed with the Sun. She interceded for poor humanity with her Son and won the day.
We are at such crossroads now and this May let’s not fail to turn to her in all of our needs. Everything we give to her, all of our prayers, go immediately to Jesus, Who gives them to the Father in the power of the Holy Spirit.I strongly urge you to totally consecrate yourself to Jesus through Mary, pray the Rosary every day, and have confidence in her maternal intercession.
Above all love your Mother, for I promise you—your Mother loves you.
God Bless You
Fr. John Corapi
Saturday, May 2, 2009
May is the month of Mary
Sometimes I get so distracted, I overlook feast day. However, I continually give thanks to a gracious God who sends me reminders to stay close to Him.Yesterday, without remembering it was the first of May, I posted about Christina's devotion to the rosary. May is the month of Mary, as my friend at Totus Tuus blog reminds me. I will be joining her in a series of Marian posts this month.
If you want to participate, you may copy this image and link to her blog. And don't forget the Litany of Our Lady of Loreto where you will find the title of this blog, Cause of Our Joy.
Friday, May 1, 2009
Remember this

The girls had a half day today, and are stuck inside together. Bickering.
So, Lord, please help me remember this moment last week, before I intervene.
I was writing on the computer when Christina took my hand to show me something in the living room.
She had lined up puppets and stuffed animals on chairs, with rosaries in front of them. Her little finger is in the photo indicating that they have the rosary.
She had lined up puppets and stuffed animals on chairs, with rosaries in front of them. Her little finger is in the photo indicating that they have the rosary.
Thank you, Lord for these moments of grace to sustain my patience in the trials of everyday mothering.
Thursday, April 30, 2009
IDSC for Life to be features on John and Kathy Show
The IDSC For Life will be interviewed on the John and Kathy Show in Pittsburgh, PA. You can catch us on Wednesday, May 6, at 4:14 eastern time. We are very excited about this opportunity to share about the IDSC For Life! You can listen in on their website linked above. We hope to be able to link an audio after the interview.
We hope you can join us!
Tuesday, April 28, 2009
Bedtime was a nightmare tonight
So I got this link from Jen (Conversion Diary) on Twitter, and now I feel better.
Monday, April 27, 2009
I'm speaking at the Pro-life Coffee House May 9

If you would like to hear me explain how God has blessed us, and particularly what a child with Down syndrome gives to a family, come to the
Pro Life Coffee House
Academy of the Holy Family,
W Main Street
Baltic, CT
on Saturday, May 9 at 7PM.
You will also hear from members of the Smith family, parents of Christy's church buddy, 7 year old Tommy. You will be blessed to hear of his parents' unselfish gifts of their time to take care of Tommy, and the joy he in turn gives to the whole family.
Come and share an evening of the joy of special parenthood!
Friday, April 24, 2009
Seven Quick Takes Friday
Thanks again to Jen at Conversion Diary for hosting 7 Quick Takes this Friday.




1. During Holy Week, Francisco started construction on the bonus room which he's making into a big bedroom for Gabbi. She'll have the best view in the house, and plenty of room for sleepovers. 



2. We learned more about country life. The farmer accross the road has a cornfield. The farmer up the hill has cows. They worked out a deal, and what I affectionately call the "Poop Truck" makes several runs down the hill, past my house each week. Only sometimes the road is bumpy and they leave fragrant samples along the road.
Green acres, we are there!
Especially at night. ZZZZZZZ
4. We took our girls to Watch Hill, RI on a balmy 70 degree day, and dipped the tips of our toes (YES, the water was COLD!) into the ocean. The teenagers slept while Bella explored and Christina watched. I took photos, naturally.
The ocean was a mixture of aqua and royal blue, sparking in the sunshine. What a wonderful time we had!


.


5. I have been growing things for spring; on the first day I began life as a stay at home mom with kids in school (I was a homeschooling mom) I planted some flowers in my lovely garden window, thinking I'd have plenty of time to garden.
Well. . .they need thinning and transplanting, and I have no time with all the writing assignments I have.
Nice thought though.
Well. . .they need thinning and transplanting, and I have no time with all the writing assignments I have. Nice thought though.
6. Over Easter vacation we took in three boarding students from Gabbi's school, girls who were not going home for Easter. That gave us an excuse to go exploring our local environs. We took them to the mall in Providence and came upon this tea party at the Capitol Building.
7. I almost have my manuscript ready for the publisher. Should be working on it right now.
Thursday, April 23, 2009
Asking for research funds from the Stimulus package
Dr. Raynard Kington
Acting Director
National Institutes of Health
9000 Rockville Pike
Bethesda , Maryland 20892
Dear Dr. Kington:
As members of the Congressional Down Syndrome Caucus and on behalf of the 400,000 individuals with Down syndrome and their families, we are writing to request that you allocate additional fiscal year 2009 funds, as well as a portion of the funding provided to NIH as part of the American Recovery and Reinvestment Act (Public Law 111-5) to meet the short- and long-term objectives of the agency’s strategic plan for Down syndrome.
We support the recommendations of the January 2008 NIH Research Plan for Down Syndrome, and appreciate your agency’s commitment to improving the health of people with Down syndrome. However, we are concerned the resources NIH currently dedicates to Down syndrome research are not sufficient to effectively accomplish the goals set in the plan. In addition, we were hopeful that NIH would include Down syndrome in its documents which listed NIH's "Highest Priority Challenge Topics" for potential grant topics for federal funding through the American Recovery and Reinvestment Act, yet it was not.
In fact, NIH funding for research related to Down syndrome has decreased significantly in recent years, from $23 million in 2003 to $17 million in 2008. With nearly 400,000 people with Down syndrome living in the United States today, this means that only $40 is being committed in research dollars for each person with Down syndrome, far less than the amount of research funding allocated to far less common medical conditions. Since Down syndrome occurs in people of all different races and origins, the lack of funding for research on the condition further contributes to significant health care disparities. Therefore, we believe tripling the NIH funds dedicated to Down syndrome research over the next three years is a reasonable goal for achieving the critical objectives outlined in the strategic plan.
With the allocation of additional funding, there is no shortage of promising research projects, including applications currently pending with NIH, which would help meet the near-term goals of the strategic plan. We understand the Trans-NIH Working Group on Down Syndrome received a two-year project list, based on a survey of nearly two dozen researchers, scientists and other medical professionals. Scientists and medical researchers from well recognized institutions Stanford, Johns Hopkins, and the University of Colorado contributed to the list. Areas of research covered by these projects and applications include:
(1) the pathophysiology of Down syndrome and disease progression;
(2) diagnosis, screening and functional measures;
(3) treatment and management;
(4) research infrastructure; and
(5) living with Down syndrome.
Additional NIH funding is also needed to make research mice more affordable and widely available. As you know, a major impediment to the development of new treatments for people with Down syndrome is the high cost of mouse models that exhibit different subsets of Down syndrome phenotypes. At an initial cost of more than $200 per mouse, research expenses can reach hundreds of thousands of dollars per year, thereby discouraging researchers and promising areas of Down syndrome research. We urge NIH to allocate additional funding to offset the cost of such mice.
Increasing funding for Down syndrome research is critically important not only to people with the condition, but to millions of Americans afflicted with many other conditions. Seizure disorders, Alzheimer’s disease, congenital heart disease, leukemia, diabetes, celiac disease and hypothyroidism are just a few of the medical conditions that more commonly occur in people with Down syndrome. By finding research solutions for people with Down syndrome, millions of Americans without Down syndrome will benefit as well. Further, adults with Down syndrome are less likely to develop many types of solid tumor cancers, including breast cancer, lung cancer, and mouth cancers, in comparison to people who do not have Down syndrome. Further research may unlock the mysteries and new therapies for many human cancers.
We recognize the difficulties in the NIH budget, but with the new federal funding, the scientific support, and the NIH Roadmap, we believe now is an ideal time for NIH to act to fully support Down syndrome research. Significant Down syndrome research has been slowed, and, in some cases, halted, because of the recent lack of research funding. This is particularly acute at a time when increased funding by NIH is needed to advance recent important research discoveries through translational research initiatives to develop effective new therapies for children and adults with Down syndrome. Therefore, we strongly encourage you to use fiscal year 2009 funds and resources available in the American Recovery and Reinvestment Act (Public Law 111-5) to put NIH on path toward tripling the amount of funding dedicated to Down syndrome research, necessary to fully implement the short-term goals outlined in the 2008 NIH Research Plan on Down Syndrome.
Thank you in advance for your consideration. We look forward to your prompt response.
Sincerely,
Rep Cathy McMorris Rogers (R, WA)
Acting Director
National Institutes of Health
9000 Rockville Pike
Bethesda , Maryland 20892
Dear Dr. Kington:
As members of the Congressional Down Syndrome Caucus and on behalf of the 400,000 individuals with Down syndrome and their families, we are writing to request that you allocate additional fiscal year 2009 funds, as well as a portion of the funding provided to NIH as part of the American Recovery and Reinvestment Act (Public Law 111-5) to meet the short- and long-term objectives of the agency’s strategic plan for Down syndrome.
We support the recommendations of the January 2008 NIH Research Plan for Down Syndrome, and appreciate your agency’s commitment to improving the health of people with Down syndrome. However, we are concerned the resources NIH currently dedicates to Down syndrome research are not sufficient to effectively accomplish the goals set in the plan. In addition, we were hopeful that NIH would include Down syndrome in its documents which listed NIH's "Highest Priority Challenge Topics" for potential grant topics for federal funding through the American Recovery and Reinvestment Act, yet it was not.
In fact, NIH funding for research related to Down syndrome has decreased significantly in recent years, from $23 million in 2003 to $17 million in 2008. With nearly 400,000 people with Down syndrome living in the United States today, this means that only $40 is being committed in research dollars for each person with Down syndrome, far less than the amount of research funding allocated to far less common medical conditions. Since Down syndrome occurs in people of all different races and origins, the lack of funding for research on the condition further contributes to significant health care disparities. Therefore, we believe tripling the NIH funds dedicated to Down syndrome research over the next three years is a reasonable goal for achieving the critical objectives outlined in the strategic plan.
With the allocation of additional funding, there is no shortage of promising research projects, including applications currently pending with NIH, which would help meet the near-term goals of the strategic plan. We understand the Trans-NIH Working Group on Down Syndrome received a two-year project list, based on a survey of nearly two dozen researchers, scientists and other medical professionals. Scientists and medical researchers from well recognized institutions Stanford, Johns Hopkins, and the University of Colorado contributed to the list. Areas of research covered by these projects and applications include:
(1) the pathophysiology of Down syndrome and disease progression;
(2) diagnosis, screening and functional measures;
(3) treatment and management;
(4) research infrastructure; and
(5) living with Down syndrome.
Additional NIH funding is also needed to make research mice more affordable and widely available. As you know, a major impediment to the development of new treatments for people with Down syndrome is the high cost of mouse models that exhibit different subsets of Down syndrome phenotypes. At an initial cost of more than $200 per mouse, research expenses can reach hundreds of thousands of dollars per year, thereby discouraging researchers and promising areas of Down syndrome research. We urge NIH to allocate additional funding to offset the cost of such mice.
Increasing funding for Down syndrome research is critically important not only to people with the condition, but to millions of Americans afflicted with many other conditions. Seizure disorders, Alzheimer’s disease, congenital heart disease, leukemia, diabetes, celiac disease and hypothyroidism are just a few of the medical conditions that more commonly occur in people with Down syndrome. By finding research solutions for people with Down syndrome, millions of Americans without Down syndrome will benefit as well. Further, adults with Down syndrome are less likely to develop many types of solid tumor cancers, including breast cancer, lung cancer, and mouth cancers, in comparison to people who do not have Down syndrome. Further research may unlock the mysteries and new therapies for many human cancers.
We recognize the difficulties in the NIH budget, but with the new federal funding, the scientific support, and the NIH Roadmap, we believe now is an ideal time for NIH to act to fully support Down syndrome research. Significant Down syndrome research has been slowed, and, in some cases, halted, because of the recent lack of research funding. This is particularly acute at a time when increased funding by NIH is needed to advance recent important research discoveries through translational research initiatives to develop effective new therapies for children and adults with Down syndrome. Therefore, we strongly encourage you to use fiscal year 2009 funds and resources available in the American Recovery and Reinvestment Act (Public Law 111-5) to put NIH on path toward tripling the amount of funding dedicated to Down syndrome research, necessary to fully implement the short-term goals outlined in the 2008 NIH Research Plan on Down Syndrome.
Thank you in advance for your consideration. We look forward to your prompt response.
Sincerely,
Rep Cathy McMorris Rogers (R, WA)
Tuesday, April 21, 2009
Monday, April 20, 2009
Susan Boyle; overcoming the tyranny of low expectations
As a mentally disabled schoolgirl with frizzy hair, Susan was mocked. She was one of 9 children, and lived with her parents caring for them till their deaths, she attended Sunday Mass and sang in the choir.Her life was one of quiet service.
I'd call her a success, just based on that. However, thanks to her triumph at "Britain's Got Talent" the world is calling her a success as well.
Why did they assume that she was a loser just because she doesn't fit the stereotype of a beautiful slim young vocalist?
If you are too loving to have been one of the crowd who laughed at Susan's dream, then this story will make your day, over at Aliens in this World blog.
UPDATE: I have the embedded video!!
I'd call her a success, just based on that. However, thanks to her triumph at "Britain's Got Talent" the world is calling her a success as well.
Why did they assume that she was a loser just because she doesn't fit the stereotype of a beautiful slim young vocalist?
If you are too loving to have been one of the crowd who laughed at Susan's dream, then this story will make your day, over at Aliens in this World blog.
UPDATE: I have the embedded video!!
Sunday, April 19, 2009
Catholic writers meet for lunch in Massachusetts
Two Saturdays ago, at the suggestion of Heidi Hess Saxton, my former editor of Canticle Magazine, a xolumnist at Catholic Mom, and
founder of the Extraordinary Moms Network, I had a Catholic writer's luncheon. It was a blast!
I had the pleasure of meet in two Catholic authors whose columns I admire on Catholic Mom: Patrice Fragnant-McArthur who blogs at Spiritual Woman(next to me) and Pat Gohn, who blogs at Write In Between and has started up a podcast called Among Women. Pat Gohn has a background in radio, and worked on Long Island, in two stations close to where I grew up, but transferred to Boston in the 1990's.
We discussed their Master's degrees in Theology (I am considering this but time and finances are limited) being a Catholic writer, and how we hope that our writing help to evangelize the culture. We spent two hours together, and the time flew by. I hope we can get together again sometime soon.
We recorded a podcast right there in 99 Restaurant near Worcester, MA. When it airs, I'll be linking to it here.
founder of the Extraordinary Moms Network, I had a Catholic writer's luncheon. It was a blast!I had the pleasure of meet in two Catholic authors whose columns I admire on Catholic Mom: Patrice Fragnant-McArthur who blogs at Spiritual Woman(next to me) and Pat Gohn, who blogs at Write In Between and has started up a podcast called Among Women. Pat Gohn has a background in radio, and worked on Long Island, in two stations close to where I grew up, but transferred to Boston in the 1990's.
We discussed their Master's degrees in Theology (I am considering this but time and finances are limited) being a Catholic writer, and how we hope that our writing help to evangelize the culture. We spent two hours together, and the time flew by. I hope we can get together again sometime soon.
We recorded a podcast right there in 99 Restaurant near Worcester, MA. When it airs, I'll be linking to it here.
One Year Ago Today I met Pope Benedict
I was at the Papal Youth Rally at St Joseph's Seminary in Dunwoodie, enjoying time with my daughter Gabbi and the youth. I wrote this article about my experience for the National Catholic Register. I also made this montage (below)with some of the photos I took.
What a wonderful time that was, the Pope, the President and the people united in joy.
How I miss that sense of unity now.
Pray for the Divine Mercy of God to heal our nation!
Here is what happened one year ago yesterday. Pope Benedict had a special encounter with a young man with T21.
What a wonderful time that was, the Pope, the President and the people united in joy.
How I miss that sense of unity now.
Pray for the Divine Mercy of God to heal our nation!
Here is what happened one year ago yesterday. Pope Benedict had a special encounter with a young man with T21.
Divine Mercy Sunday
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