Monday, September 24, 2012

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.


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,

Wednesday, August 1, 2012

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.”

Sunday, July 22, 2012

Friday, April 13, 2012

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.

Wednesday, March 21, 2012

World Down Syndrome Day!

Happy World Down Syndrome Day to our KIDS families!  I am enjoying seeing so many videos and postings on Facebook and on the web by parents of children with Down syndrome and advocacy groups.  Leticia is attending the U.N. event in honor of WDSD.  I cannot wait to hear about her experience there.

Here is a speech our KIDS friend, Congresswoman Cathy McMorris Rodgers, made in the House of Representatives today.

Monday, March 19, 2012

"A Special Mother is Born" is now available as an ebook!

You can order it here at WestBow Press for only $3.99 and read it on your phone, Ipad, Kindle, tablet or home computer. The ebook version will be available soon on Amazon, and Barnes & Noble.

Sunday, February 5, 2012

Congressional Down Syndrome Caucus Wants to hear from you!

BIG NEWS! The Congressional Down Syndrome Caucus is launching its "Featured Person of the Week" series. We want to share stories of individuals with disabilities to highlight the incredible things they're doing. Please send your submissions (with a photo and a brief biography) to A new person will be featured every Friday. Share with your friends and spread the word!

Wednesday, February 1, 2012

Leticia's column in Anchorage Alaska paper

A few months ago I wrote a response to a mother in Alaska who feared that research to help improve the lives of those with Down syndrome implied rejection of her precious child. I reassured her in this column that the opposite is true, we support research because we love our children and want the best for them.

KIDS West!

KIDS has branched out to the West Coast! California mom Heather Graves proudly carried our banner at a candlelight prayer vigil in San Diego.
Heather reports:
It is with great pride that my sister and I held the "Keep Infants with Down Syndrome" Banner at our Pro-Life Candlelight Prayer Vigil along Harbor Dr. in downtown San Diego. There were about 180 people lining the street holding signs, candles and praying together. We got a lot of support and encouragement by those who passed by.

The birth of my son John Carroll 3 years ago filled my life with joy. It also opened my eyes to the horrific reality of the over 90% abortion rate of the innocent unborn diagnosed with Down Syndrome. I have always been an active member of the pro-life movement. I was ashamed that I was not aware of this grim reality. I am so grateful for the opportunity to defend the life of the unborn.
We are thrilled to have KIDS represented on the West Coast!

Incidentally, the banner Heather carried was donated by Melissa Souza. Melissa does not have a child with Down syndrome, but she has a heart for them.  She contacted me last year wanting to contribute something to KIDS.  I suggested signs or a banner, and she quickly located a pro-life printer who made a banner from our logo.  Melissa has a business called Baby’s Own Space, making beautiful personalized name plaques for children. Please check out her website and support this pro-life mom’s business.

Thank you Heather and Melissa for supporting KIDS and helping us defend and celebrate the lives of children with Down syndrome!

Wednesday, January 25, 2012

Fourth Annual KIDS Event at the 2012 March for Life in DC

KIDS held its fourth annual event at the March for Life in Washington, D.C.  We had approximately 75 attendees at our event, which was held at the headquarters of the National Right to Life Committee.  NRLC generously invites us each year to use their offices and provides sandwiches and refreshments before joining the other several hundred thousand participants in the March for Life.

As in previous years, we were honored to be joined by Congresswoman Cathy McMorris Rodgers from Washington state, who is the proud mother of 4-year-old Cole who has Down syndrome.  She started the Congressional Down Syndrome Caucus and is a champion for individuals with special needs in Congress.  She was joined by Dr. Karen Summar, a Kennedy fellow and developmental pediatrician, who is working with Cathy for the year and is assigned to the House Energy and Commerce Committee, focusing on disability issues.

Cathy spoke about the work they are doing in Congress.  They are pursuing funding the Prenatally and Postnatally Diagnosed Conditions Awareness Act, and have introduced two bills, the Centers of Excellence in Down Syndrome Translational Research Act and the Down Syndrome Research Resources Act.  She spoke about how she is connecting with the Alzheimer's research community and how important it was to coordinate research for both Down syndrome and Alzheimer's (because of their close relationship genetically).  She also spoke of the status of the ABLE Act.  We will go into more detail about the issues Cathy talked about in a future post.

We presented Cathy with a beautiful, patriotic hook rug wall hanging with the message "God Bless America," which was made by one of our members, 18-year-old Anna Sheppard who has Down syndrome (will update with photo later). 

After the event, most of our group continued on to join the march.

Out of the thousands of schools, parishes, faith communities, and other pro-life groups represented by the several hundred thousand participants at the March for Life, KIDS may have been the only group that represented a group of babies who are literally sought out and targeted for abortion through prenatal testing.
KIDS was formed so families and friends of individuals with Down syndrome could walk in solidarity in the March for Life and to bring attention to the tragically high abortion rate of babies prenatally diagnosed with Down syndrome.

Thank you Rep. McMorris Rodgers and Dr. Summar for being our special guests, and thank you to NRLC for hosting our KIDS event!  And thank you to the family and friends who attended, making the event a success!

Friday, January 13, 2012

KIDS conference is pen for free in person or online registration

Council on Poor Prenatal Diagnoses
& Therapeutic Intervention
Founding Partners:
Medical Students for Life, Family Research Council,
Keep Infants with Down Syndrome & Jérôme Lejeune Foundation USA
First Annual
Conference on Medical Advances in Prenatal Diagnoses
Saturday, January 21, 8:30 am – 5 pm
Family Research Council, 801 G Street, NW , Washington DC
Register at or watch webcast

 Presenters include:
Alberto Costa, MD, Ph.D.
Byron Calhoun, MD
John Bruchalski, MD
David Prentice, Ph.D.
Gerard Nadal, Ph.D.

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

The goals of the Conference are:
·       affirm the life and dignity of all persons, especially those diagnosed prenatally with a disability or lethal condition
·       review how information about prenatal diagnoses of disability or lethal condition is currently delivered
·       consider how this information might be delivered more comprehensively
·       consider the impact of a new blood test for Down syndrome in obstetric care
·       explain the work of the Council and its year-long engagement on prenatal diagnosis issues
·       review best practices for postnatal care of infants with disabilities in perinatal hospice and in hospital, home and medical daycare settings
An agenda for the day will be available soon. Our host for the day, the Family Research Council (FRC), has limited space, so this first Conference is by invitation only.  However, FRC will be webcasting all general sessions that day, which can be viewed  For more information, contact Jeanne Monahan at Family Research Council, ( 202- 225-4008) or Peg Kolm, at (240-994-0603).  We welcome your interest and expertise in this effort, and hope you can join us on January 21.

Thursday, January 5, 2012

Fourth Annual KIDS Event at March for Life

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

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

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

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

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

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

Eileen and Leticia