Clara Gaymard Lejeune, Daughter of Dr Jerome Lejeune speaks at The Magnificat Day of Faith

E:60 - Perfect little girl with Down syndrome; Paisley White

Good news from Rep Cathy McMorris Rodgers!

We at KIDS have a special relationship with Congresswoman Cathy McMorris-Rodgers, she is our advocate for our children in Washington. She founded the Congressional Down Syndrome Caucus for this purpose, and we support her efforts.

Here is her latest accomplishment, which will advance research which can benefit those with T21.

Leticia

I’m excited to share some great news with you: Last week , the House passed my bill with Rep. Lois Capps (D-CA) to advance research into pediatric disorders such as Down syndrome and spinal muscular atrophy (SMA). Our bill – HR 6163, the National Pediatric Research Network Act (NPRNA) - will create research networks focused on pediatric diseases, giving new hope to millions of Americans who suffer from these conditions and their families. As a mom whose child has special needs, I know that, far too often, research into pediatric disorders lags behind research into other medical conditions. For example, while children represent about 20 percent of the U.S. population, the National Institutes of Health (NIH) uses only about 5 percent of its extramural funds on pediatric research. In addition, studies have shown that one of the most effective ways to increase collaboration for medical discovery is through organized research networks. Unfortunately, since pediatric diseases can be relatively rare in certain communities, research is often limited to single-site research studies, which can be inefficient in finding potential treatments and cures. That’s why our bill is so important: It will take pediatric research to the next level by authorizing NIH to establish up to 20 pediatric research networks, enhancing collaboration among medical researchers, and giving new hope for medical breakthroughs. I want to thank my friends in the disabilities community for all their work to get my bill passed through the House. Now we need the Senate to join us and take action soon. To learn more about my bill, click here . To watch my House floor speech advocating for the bill, please click here . Thank you for your interest in this issue. As always, feel free to contact me about any issue you care about. Warm regards,

First ever drug to treat Down syndrome

Dr Alberto Costa and his daughter Tyche

An encouraging article by Dan Hurley in the Washington Post describes the clinical trials of the first ever drugs to improve learning and memory in those with Down syndrome, conducted by Dr Alberto Costa and Dr William Mobley. Enthusiasm is spreading througout the research community that Down syndrome, once considered too complex to treat, and abandoned by researchers, is now the subject of clinical trials.

“A lot of us are well aware of progress we’ve seen . . . in the past five to 10 years,” said Jamie Edgin, a developmental psychologist at the University of Arizona in Tucson. Among those advances, she said, are tests designed to measure the cognitive abilities of people with Down syndrome. The development of mice with the genetic equivalent of Down syndrome, essential for studies of possible drug treatments, has been another milestone. “There’s a lot of excitement,” Edgin said.

It is a devastating irony that stunning advances in accuracy in  prenatal testing  AND the first clinical trials for medicine to treat cognitive impairment of Down syndrome are discovered concurrently. Sadder still is the fact that the prenatal testing is receiving vastly more press coverage.
Imagine the excitement in the press if a new cancer drug were discovered?! Well, this is how the families of over 400,000 Americans who have Down syndrome feel about this drug and its potential to change lives. Not only can it help my ten year old daughter communicate with her classmates, but it may help insure that she has more classmates who look like her.
Maybe, just maybe, if mothers who are told that their unborn baby has Down syndrome heard that there are amazing advances in treatment for the cognitive delays in Down syndrome, they would not despair of their child's potential for a happy and fulfilling life as stated in this article.

Servant of God, Dr Jerome Lejeune

Of course, we who love our children with 'designer genes' already know their lives are wonderfully rich, full of love and learning, and giving back to their community. But if it takes more hope to help bring such gifted people to birth, then we want to be the first to spread the word. Thank you WaPo for joining us in our efforts to spread the good news.
Dr Jerome Lejeune, the French geneticist who won the Kennedy prize for his discovery of trisomy 21, the cause of Down syndrome spent his career hopeful that such treatments would be discovered, and his family via Lejeune USA  continues to fund such promising research. Dr Lejeune understood the importance of such research when 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.”

The Love Chromosome

Cafe de Flore

A new French film Cafe de Flore tells the story of a valiant mom of a son with Down syndrome in 1969 in Paris. Johnny Dep's girlfriend, Vanessa Paradis fought for the powerful role of the mother.

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