Down Syndrome Caucus secures research money!

On April 27, 2009, I, along with the other members of the congressional Down syndrome caucus, wrote to the National Institutes of Health (NIH) expressing concern with the lack of funding for Down syndrome research. (You can read that letter here.)

In particular, we requested NIH triple its funding to Down syndrome research, especially in light of additional funding made available from the stimulus package. We felt NIH’s response to our letter was inadequate and requested an in-person meeting to discuss their commitment to Down syndrome.

As a result, a week ago today, Dr. Yvonne Maddox, Deputy Director, of the Eunice Kennedy Shriver National Institute of Child and Human Development (NICHD), briefed me and the other caucus co-chairs on NICHD’s funding priorities. I was extremely pleased to hear NICHD reaffirm its commitment to the short and long term goals set forth in the 2008 Research Plan on Down syndrome, particularly through NICHD’s commitment to future funding announcements for Down syndrome research over the next five years.
Equally exciting, as I mentioned above, was the long-awaited introduction of the Trisomy 21 Translational Research Parity Act of 2009, which I sponsored, together with Congressman Patrick Kennedy (D-RI) and Congressman Pete Sessions (R-TX). This bill is critical to ensuring Down syndrome research remains on par with the research infrastructure of other diseases.
In 2000, the Children’s Health Act amended the Public Health Services Act in a number of ways, including by authorizing research and surveillance for a number of conditions and disabilities such as juvenile diabetes, Fragile X, asthma, and epilepsy, autism, and traumatic brain injuries. However, the amendments did not authorize the research and surveillance of Down syndrome.
The Trisomy 21 Translational Research Parity Act of 2009, will bridge the critical gap that currently exists in Down syndrome research between basic medical research and cutting edge clinical trials. The bill will recognize at least six Centers of Excellence around the nation that will be dedicated to conducting translational research as well as create the much need biobank and registry to assist with the Down syndrome translational research program.
More than 400,000 individuals have been diagnosed with Down syndrome (also known as Trisomy 21). The extra chromosome causes varying degrees of intellectual disabilities as well as physical abnormalities. As a result, those with Down syndrome also have a number of other medical conditions, including: Alzheimer’s disease, autism, and other neurological and psychiatric disorders. I believe the funding opportunities confirmed by NICHD this week as well as the research infrastructure authorized by the Trisomy 21 Translational Research Parity Act of 2009 will not just benefit individuals with Down syndrome but the millions people with other conditions and diseases.
While we have a long way to go, I believe last week represented a turning point in our efforts. I look forward to continuing working with the disability community to ensure funding and infrastructure remains a priority here in Congress.
Bravo Representative McMorris Rogers!!!
She is the best friend the Down syndrome community has in Congress. She is pictured here with me, Eileen Haupt and other members of Keep Infants with Down Syndrome.
Now exciting research projects like those of Dr William Mobley of the Down Syndrome Research and Treatment Foundation can get the required funding they need to move forward. Maybe someday, there won't be a 90% abortion rate for children with Down syndrome, once we can give hope to parents from this promising research.

Feast of the Archangels Gabriel, Michael and Raphael

Happy feast day to my three archangels Gabriela, my daughter, Ralph, my dad, and Michael my nephew.
Now I'm going over to Servant of the Word to read the prayers and readings of today with my daughter while we eat a celebratory brownie!

Playing catch up and its fall in Connecticut

Now that I'm home from Dad's house, and Washington, home for the first time in over two weeks, it's time to play catch up.
I spent some wonderful time with family and new and old friends at the funeral and afterward (which I'll share in a later post) but now I have to face the effects of nearly putting off housekeeping and writing on hold for the length of Mom's illness (four months). A good decision I will never regret, but a costly one. I was swamped then, I don't have a word for how behind I am in book reviews, news stories, blog posts, and assignments.
Monday morning, I was confronted by a neglected home, VERY sore feet from Washington DC, and suitcases full of our clothing and Mom's belongings. Did I mention that I broke a tooth? That's where I spent today and will spend two other days, at the dentist beginning a root canal and crown, which will cost us about $500. All because I grind my teeth at night. I'm getting a night guard for that too.
After the dentist, I had a school meeting for Christina with her teachers where we discussed using a communication augmentation tool. I had been resistant to the idea at first, feeling it would replace speaking, but once Christina pushes a button with a drawing on it and hears the recording say, "I would like a drink" she repeats it and is truly learning language. So I have to come up with nine phrases she needs to learn at home. Can you believe I am having trouble finding them?
The three I have are "I want to go outside" , "I want to read a book", and "I want to read a story". I think the problem is that she does make her needs known at home, albeit incompletely. She says 'book' and we understand. She shoves a Veggie Tales DVD in our faces, and we get the point. Now we can refine the language a bit. One phrase I would give the world to hear is "I have to use the toilet". At Dad's house, we were overjoyed to find her using it on her own!!! We did back flips for joy. She hasn't done it again. Sigh.

It's fall up in Connecticut. Brilliantly colored trees, crisp sunshine and cool breezes brush my cheek as I hurry to ferry the girls to and fro. But this time, Gabbi is driving! I'd take photos but I haven't unpacked the camera yet. So I'll let my friend at Totus Tuus Family Homeschool share about autumn with her beautiful mix of artsiness and Catholicism.
It features my favorite Irish tune which always rings true this time of year, performed with a truly gifted voice.

Tennessee Ernie Ford sings with children

Need to smile today? Watch this charming video of children stealing the show from the famous Gospel singer.

What do you think of Glenn Beck?

Barbara Curtis at Mommy Life is asking for our opinon on Glenn Beck. She is writing a piece for his website, and will be appearing on his 9-12 Moms show this Monday at 5PM on The Glenn Beck Show on Fox.
Here is my opinion:
Glenn Beck is a phenomenon because he is completely honest with his audience, he never plays politics, but speaks from the heart and shoots from the hip, ignoring conventional wisdom which even some talk show hosts seem to follow. For example, I think Sean, Rush, and O'Reilly are pro-life but when is the last time they discussed the health care bill with respect to life issues? It's always money and politics with them.
Glenn is in touch with the people and what makes them passionate; like 9-12 Moms.
He strikes a chord with the folks. That's why he is a sensation. He deserves it. That's also why the liberal media is focusing on his zaniness, trying to discredit them as they tried to do with Sarah Palin. He's in for a rough time.
Glenn also takes the time to draw upon lessons of history like his chalkboard flow chart on the health care bill and its relationship to the history of eugenics both here and in Nazi Germany. It was outstanding, and outside of Catholic TV programs, and Wesley Smith lectures, practically unprecedented.

He is a prophet for our times, declaring the dangers inherent in the Culture of Death.

One last comment; as the mom of a special needs daughter, I know where some of his passion originates; LOVE of his special child. He knows what we know, Barb, that if we don't change the Culture of Death, it will destroy our children after we are gone. That's why he was the first to champion the case of Terri Schiavo.
Go Glenn!

Shared grief shared burdens

Fr Stephen has some comments on his experience of grief on his blog

I especially appreciate the feeling of kinship among those who have experienced grief.

"I think in the same manner we can “weep with those who weep” learning that such things are not utterly private as our culture often teaches, but that the loss and suffering of one is the loss and suffering of us all. Even Christ wept over the grave of his friend Lazarus."

I noticed that those who were the most generous with their time and on target with their condolences were those who have also experienced loss of a loved one. Grief deepens your capacity for empathy, if you are centered in a life of prayer and liturgy.
Thank God for our wonderful Church, and my wonderful family and friends.

Recourse to Mary in time of sorrow

Thank you to all my friends and family who are embracing us with love and prayer during the wake of my mother. The large crowd who attended last night's wake was truly touching We will begin tonight's viewing by reciting the Luminous Mysteries of the holy rosary at 7:15.

Her funeral is tomorrow at 10AM in St Philip Neri Church 344 Main Street, Northport, NY 11768.
If you can't come, please pray for us as we walk through a valley of tears.

St. Alphonsus di Liguori"This world being a place of merit, it is rightly called a valley of tears; for we are all placed in it to suffer, that we may, by patience, gain our own souls unto life eternal. When our crosses weigh heavily upon us, let us have recourse to Mary, who is called by the Church the Comfortress of the afflicted; and by Saint John Damascene, the Remedy for all sorrows of the heart.
Ah, my most sweet Lady, thou who wast innocent didst suffer with so much patience; and shall I, who deserve hell, refuse to suffer? My Mother, I now ask thee this favour—not, indeed, to be delivered from crosses, but to bear them with patience."

Glories of Mary, (Tan Books: 1978), 497-8.
HT Mary Vitamin

My mother's funeral arrangements

The plans for my Mom are at:
Nolan & Taylor-Howe Funeral Home
5 Laurel Avenue
Northport, NY 11768-3166
(631) 754-2400

Visiting:
Monday 21st @ 2 pm -5 pm and 7 pm - 9 pm.
Tuesday 22nd @ 2 pm - 5 pm and 7 pm - 9 pm.

Funeral Mass Wednesday the 23rd @ 10 am :
St Philip Neri Church
344 Main St.
Northport, NY 11768

Interment at Holy Rood Cemetery in Westbury, with a Celebration of Eleanor's life to follow at:
Napper Tandy's Irish Pub
229 Laurel Ave.
Northport, NY
(631) 757-4141

From - 2 pm - 5pm

In Lieu of Flowers Donations may be made to:

Life Center of Long Island
35 East Willow Street
Massapequa, NY 11758

(631) 798-9100

Into the Mercy

Just fifteen minutes before the hour of mercy, 3PM, my mother, Eleanor Bonk Crafa, left this vale of tears to fly into the loving merciful arms of Jesus.

She was surrounded by her family and we prayed a Chaplet of Divine Mercy to send her off. She had been given an Apostolic Blessing, which carries a plenary indulgence and received holy communion this morning.

It was a happy death.



Eternal rest grant unto her, O Lord, and may perpetual light shine upon her.
May her soul and the souls of the faithful departed, through the mercy of God, rest in peace.
Amen

Rep Cathy McMorris Rogers supports Healthcare for Gunner

Rep Cathy McMorris Rogers is a champion for disabled children, as well as the proud mother of Cole, her son with Down syndrome. Here is a link to the YouTube video of her remarks at Healthcare for Gunner press conference yesterday.

Healthcare for Gunner press conference in Washington DC

I was part of this group who spoke out about fears that our disabled children will be denied health care when resources dwindle, as they have in Canada.

My first press conference this Tuesday Sept 15

I will be part of Students for Life "Healthcare for Gunner" press conference on Tuesday, Sept 15 at 10AM on the major cable news outlets.
I will be representing International Down Syndrome Coalition for Life, and showing Christina's photo. as I speak.
It is the feast of the Sorrowful Mother, may she intercede for our success to convince Congress to amend the health care plan 3200 until it protects the lives of the vulnerable and the unborn.

Follow my posts at the Hartford Catholic Examiner

Click here to read my first story on the famous 1971 letter to a prolife constituent to see how far Teddy Kennnedy strayed from his Catholic roots.

Discrimination against Down syndrome

Doctor denied visa because son is burden on the health care system in Austrailia.
Read the entire story here.

Sacrifice of Enduring Love

I am registering for this Friday's Conference "Sacrifice of Enduring Love" Eucharistic Congress at the Basilica of the Immaculate Conception on Friday Sept 11. I will be held by the Council of Major Superiors of Women Religious.
What beautiful way to pray and fast for the conversion of President Obama with Catholics Against Obamacare, and see hundreds of faithful religious women.
That entire week Washington will be flooded with Christians at prayer.
God bless our efforts, please join us in fasting and prayer.

Happy Birthday, Blessed Mother!

On dying well and the loving care of God

I am continually surprised how perfectly God meets my spiritual needs. I discovered that, because of Christina's new bus schedule, I found myself sitting in front of St Mary of the Immaculate Conception Church in Baltic, dropping off my children at school just in time to enter the church to prepare for daily Mass. It's a dream often deferred, attending daily Mass, something we strove for but never fully achieved as homeschoolers, and now I can attend Mass in peace, and pray for my family. You can be sure that my writing will improve.
On my first day at Mass, Fr Tito encouraged those of us who work to win souls for Christ, assuring us that that desire was put in our hearts by God Himself. I was inspired to go home and begin to catch up on various book reviews and article which have been piling up. On my way out the door, I noticed copies of the National Catholic Register and read In Person interview of Fr Tadeusz Pacholczyk on his work in the National Catholic Bioethics Center. A friend whom I met at Ryan Barrett's funeral told me that Fr Tad patiently counseled her throughout her parents' illness on what health decisions were morally licit in view of Church teaching. I was anxious to hear Fr Tad's reflections on the graces of a good death:
"The graces of dying well are enormous, because there is a possibility for real closure and transition for everybody. For the person who dies, it is the transition into the next life. But for those who are left behind, they can feel that they did things as best they could; they did them well; they were present. Yes, it may be hard and there may be suffering, but there can also be moments of healing and moments of seeing into the person who is about to leave, things that they may have never seen before. Those moments are a part of the human journey.
There certainly will be some tensions and pain, but I am convinced that the Lord is in the details, and he knows all of this. The particular trajectory of each of our deaths, like our lives, is in the Lord’s hands, and he fine-tunes many of those details for the benefit of those around us who are perhaps approaching death for the first time or really struggling with it. This is the mystery of grace at work. The Holy Spirit is ever present in our hospitals and in our dying moments."

Leticia on Catholic Radio International

I was recently interviewed on Catholic Radio International about my fears about Obamacare. Listen here.

Prayers for a Happy Death

Older Catholics remember saying prayers for a happy death throughout their lives. Now we shudder at the thought, avoiding the very thought that we are mortal. We don't prepare for death, we avoid the very thought of it.
That leaves people like me who are preparing a loved one for their journey home to Jesus feeling very alone. Yet in the CCC 1020 we read:
"The Christian who unites his own death to that of Jesus views it as a step towards him and an entrance into everlasting life. When the Church for the last time speaks Christ’s words of pardon and absolution over the dying Christian, seals him for the last time with a strengthening anointing, and gives him Christ in viaticum [a final Eucharist] as nourishment for the journey, she speaks with gentle assurance [in this Prayer of Commendation]"
"
Thank God for my friend and fellow writer Pat Gohn, who has written this piece on Dying with the confidence of a saint on Catholic Exchange.

Blessed Mother Teresa's birthday in heaven

Happy Birthday Mother!

She was the most vivid example of the Culture of Life of our times.

Read my review of "Mother Teresa's Secret Fire" by Fr. Joseph Langford who knew her for decades and founded her order of priests on Catholic.net

Read it here.

A short life full of love

Click here to see a documentary about a Texan couple who gave life to their son with Trisomy 13. See the love in this beautiful family and pray for those who made another choice out of despair.
NOTE: The film says that Trisomy 13 is always fatal but my research tells me that there are about 10-20% of children born with Trisomy 13 that live past the first year so disorder is not always immediately fatal. Each child is different.

The power of confession

From Holy Cross Family Ministries
Fr. Robert deLeon, CSC
"Many years ago two rowdy teenagers were in an empty church in Paris. They were splashing the holy water on each other, kicking over chairs, shouting and roaring and generally being a pain in the neck. Suddenly the door of the sacristy opened and an old priest shuffled out into the church. He didn't pay any attention to the two boys but went into a confessional box.
One boy asked, 'Who is he? What's he doing?' The other boy replied, 'He's just an old priest going to hear confessions.' The first one said, 'Let's go in and have a laugh.' The other boy agreed and they went into the confessional box, one on either side of the priest."
After a few minutes the first emerged and then later the other came out. The first boy asked, 'What did he say to you?' The second responded, 'I think he must be nuts. He told me to stand in front of that big crucifix on the altar and say three times: You did this for me and I couldn't care less.' The other replied, 'That's exactly what he told me to do. Shall we do it?' Replied the other, 'Sure, why not? It'll be good for a laugh.'
So the two boys stood in front of the large crucifix and said, 'You did this for me and I couldn't care less.' There was a pause, and by the second recitation the two vandals had fallen to their knees, stuttering and snuffling as they said, 'You did this for me and I couldn't care less.' By the third recitation two young men were lying face down on the stone floor of the church sobbing their hearts out."
This story was first told many years ago by the great Archbishop of Paris, Cardinal Jean Verdier (1864-1940). The Cardinal finished the tale by confessing, 'I know this story to be true because I was one of those boys.'"
(Original source unknown)