Call your representative today to sign on to an important letter!

 

URGENT ADVOCACY NEEDED!

The Deadline is Thursday November 30th!

PLEASE CALL your congressional representatives today and ask them to
SIGN ON to an important letter advocating for increased
NIH funding for Down syndrome research. 

After our landmark congressional hearing on October 25, the Down Syndrome Congressional Task Force Co-Chairs Reps. Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), and Cheri Bustos (D-IL) are urging Congress to make Down syndrome research a national priority.  It is extremely important to keep the momentum and pressure moving.

We are asking the Down syndrome community to call their U.S. Representatives and ask that they sign on to this critically important letter that will underscore the great importance of research benefitting people with Down syndrome. Here’s what you need to do:


Step One: Identify your U.S. Representative.  Please visit  www.house.gov/representatives/find/ to locate them. 

Step Two: Call the U.S. Capitol switchboard operator at (202) 224-3121 and ask to be connected to your Representative’s office. 

Step Three: When you are connected to the office, please tell the staff:

  • Your name, mailing address, and email address (to show that you live in their congressional district).
  • Let them know you are a Global Down Syndrome Foundation advocate.
  • ASK that your Representative “Co-Sign Representative Cathy McMorris Rodgers’ Down Syndrome Research Letter” by the deadline which is Thursday, November 30th, 12 noon EST.
  • They can contact Megan Perez in Rep. McMorris Rodgers’ office to add the Representative’s name.   The deadline for your Representative to add their name to the letter is Thursday, November 30th at 12 NOON (EST).

Step Four: Thank the staff and ask that they email you a confirmation that the Representative has signed the letter.

This important letter is a direct result of the unprecedented and landmark congressional hearing held in Washington DC on October 25, 2017.  The Global Down Syndrome Foundation was honored to be asked to testify at that hearing which focused on the need for increased federal funding for Down syndrome research and there was bipartisan agreement that Congress must make Down syndrome research a national priority.  The hearing was chaired by Chairman Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT).

Testimonies were heard from U.S. Representatives Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), and Cheri Bustos (D-IL), Global Down Syndrome Foundation President and CEO Michelle Sie Whitten, Executive Director of the Crnic Institute for Down Syndrome, Anschutz Medical Campus Dr. Joaquin Espinosa, Executive Director of the Down Syndrome Center for Research and Treatment, University of California – San Diego Dr. William Mobley, and Global’s Q Advocacy Award Winner Frank Stephens.  Frank Stephens’ testimony has had over 150 MILLION views!

Thank you for your support!

Michelle Sie Whitten and the Global Team

 

——- Approved Letter From DS Congressional Task Force Co-Chairs —- 


November X, 2017

 

The Honorable Tom Cole
Chairman
Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
2372 Rayburn HOB
Washington, DC 20515

The Honorable Rosa DeLauro
Ranking Member
Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
2413 Rayburn HOB
Washington, DC 20515

Dear Chairman Cole and Ranking Member DeLauro:

We are writing today to thank you for convening the recent Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee hearing on Down syndrome research and for your leadership in building public awareness about how this research can accelerate scientific discoveries across other major diseases. The hearing represents a significant opportunity to continue to build support for increased public and private funding for Down syndrome research.

Under your leadership, the Subcommittee has led the way in advancing federal funding for the National Institutes of Health. However, despite being the leading cause of developmental delay, Down syndrome continues to be one of the least funded genetic conditions by the agency. The research community has made significant advancements in understanding Down syndrome and its comorbid conditions in recent years, and we believe that the time is right for the federal government to expand its investment in this area.

There are between 200,000 and 400,000 people with Down syndrome in the U.S. today. People with Down syndrome are living longer than ever and are increasingly participating in the workforce, attending school, and being active, independent members of their communities.  Despite these similarities with typical individuals, people with Down syndrome also have a unique disease spectrum that predisposes them to develop some diseases and conditions and protects them from developing others. For example, people with Down syndrome rarely get solid tumor cancers, such as breast or colon cancer, but almost all individuals with this condition will develop the pathology of Alzheimer’s disease by the time they are forty. By investing in research on Down syndrome, we can learn more about this population and also learn more about diseases and conditions that impact millions of other Americans.

Down syndrome research holds incredible promise and could allow us to improve our understanding of a wide variety of diseases and conditions. We believe that our nation should make Down syndrome research a priority and take advantage of this opportunity to learn from a unique community of people who are ready and willing to help advance science. We thank you for your interest in advancing this research, and look forward to continuing to work with you both as the subcommittee begins considering end of the year and Fiscal Year 2019 funding. Should you have any further questions, comments, or concerns, please contact Megan Perez (megan.perez@mail.house.gov) in Rep. McMorris Rodgers’ office.

Sincerely,

U.S. Representatives Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), and Cheri Bustos (D-IL)