SUMMER 2019

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Overview & Speakers:

This webinar reviews how the Global Down Syndrome Foundation (Global) has worked with Self-Advocates, Congressional Champions, Scientists and the National Institutes of Health (NIH) to increase Down syndrome research funding at the NIH for the first time in nearly twenty years. Key takeaways from this presentation include:

• The importance of research and medical care in elongating life and improving the quality of life

• The history of Down syndrome being one of the least funded genetic conditions at the NIH

• Global’s AMAZING progress – science and NIH funding

• The Challenges still ahead

• What Self-Advocates and families can do to support life-changing and life-saving research and medical care for people with Down syndrome

Michelle Sie Whitten, MA

Michelle Sie Whitten, MA is the Co-Founder, President and CEO of the Global Down Syndrome Foundation (Global). Global is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education, and Advocacy. Prior to her career in the non-profit sector, Michelle was a cable TV pioneer in East Asia working for Liberty Media Corporation and Starz Encore. Her academic career was focused on international security and diplomacy and she holds a Masters degree and business certificate from Harvard University. She graduated Magna Cum Laude with a Bachelors degree from Tufts University and studied Mandarin Chinese and Women Studies at Peking University. Michelle is married to Tom, a British curator of Chinese contemporary art and they have two adorable kids, one of whom has Down syndrome.

Kevin Brennan

Kevin Brennan partners with clients to craft and execute strategies involving public policy and government advocacy, with a particular focus on the health and biosciences, renewable energy, insurance and financial services, and food and agribusiness industries. Kevin draws from his experience as legislative staff for three Members of Congress and in senior government affairs positions at Amgen and the Arthritis Foundation to help clients advance their federal advocacy objectives.

Powerpoint Presentation: Click to Download

Questions & Answers:

Howard, a parent in Aachen, Germany:

1. Great news about the NIH funding! But what’s the state-of-play in other countries? How are you advocating for DS overseas to achieve similar success at the global level?

Right now, our advocacy for NIH research funding is solely focused in the U.S. although we are aware of and encourage research support around the world.

Cassie, a parent in Estes Park, CO:

2. How can we stay up-to-date on what is happening in DC concerning Down syndrome funding and research?

Global hosts periodic webinars and provides web and email-based updates to self-advocates, families and friends on our progress in advocating for increases in federal funding for research including sample letters and materials to use in your communications to your Representatives and Senators.

Darcee, a caregiver in Belvidere, IL:

3. What is the best way to get started in trying to get your voice heard as an individual?

There are many ways to get started. Right now you can email your Senators and Representatives and ask them to support increased funding for the INCLUDE Initiative and Down syndrome research as part of the National Institutes of Health Fiscal Year 2020 budget. Additionally you can plan a visit to Washington to meet with your Senators, Representatives and their staff to educate them on Down syndrome and advocate for increased research funding.

Mirela, an organizational member in Tirana, Albania:

4. How Global support the families and people with Down syndrome in increasing their capacity to advocate (training, grants for local advocating organizations, parents network?

Global supports families by hosting trainings and educational opportunities such as our Quarterly Webinar Series, Annual Research and Medical Care Roundtable, and by providing Educational Grants to local Down syndrome organizations around the world to support education, training and advocacy work.

5. Does Global use the influence of the private sector (business) to advocate or allocate funds? Or international funding?

Global meets with many private sector businesses and continues to advocate for people with Down syndrome to further employment opportunities, to include in clinical research trials, to expand access to the entirely differently-abled community etc. We also work with other countries by awarding grants to host educational workshops and help influence private sectors in their specific countries.