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