National Coverage Determination May Limit Access to AD Treatment

March 14th, 2022 by Global Down Syndrome Foundation

Senators Steve Daines (R-MT) and John Hickenlooper (D-CO) To Be Honored

Washington, DC, May 12, 2022 (GLOBE NEWSWIRE) — The Global Down Syndrome Foundation’s (GLOBAL) annual AcceptAbility Gala will take place on May 24, 2022 at the Marriott Marquis Washington, DC, beginning at 6:00pm EST. The event will raise critical funds and awareness for life-changing research and medical care for people with Down syndrome.

Senator Steve Daines (R-MT) and Senator John Hickenlooper (D-CO) will receive GLOBAL’s highest honor – the Quincy Jones Exceptional Advocacy Award – in recognition of their dedication, support and advocacy efforts. Jonah Berger will be recognized as GLOBAL’s 2022 Ambassador.

Kyra Phillips, an award-winning ABC journalist, and John Roberts, co-anchor of ‘America Reports’ on Fox News, will emcee the event. The gala will also feature live performances from the popular rock band, American Authors, the inclusive dance troupe, RhythmXpress, and Robert Wallop, a professional dancer with Down syndrome. Celebrities such as Olympic Champion Elana Meyers Taylor will also join the inspirational event.

GLOBAL is the leading Down syndrome research and medical care non-profit in the United States. The AcceptAbility Gala honors GLOBAL’s champions and celebrates the contributions of people with Down syndrome.

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About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 120 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndromethe Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down SyndromePrenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).

Contact:

Anca Call
Global Down Syndrome Foundation
anca.consultant@globaldownsyndrome.org
(720) 320-3832
Cora Mandy
Plus Communications
cmandy@pluspr.com
(203) 980-1940

April 2022 Newsletter

April 28th, 2022 by Ben Enyart

💙💛 American Authors Performing LIVE, Exciting Alzheimer’s Research, New Pediatric Guidelines & More – Your April Newsletter!

ATLANTA, DENVER, NEW YORK (April 27, 2022) – Last week, the U.S. Food and Drug Administration (FDA) warned the public of the risk of false results, inappropriate use, and inappropriate interpretation of results with non-invasive prenatal screening tests (NIPS), also called non-invasive prenatal tests (NIPT), or cell-free DNA tests. These tests look for signs of genetic abnormalities in a fetus by testing a sample of blood from a pregnant patient.

For years, the nation’s three leading Down syndrome advocacy organizations – Global Down Syndrome Foundation (GLOBAL), the National Down Syndrome Congress (NDSC), and the National Down Syndrome Society (NDSS) – have expressed concerns over the use of, and misconceptions surrounding, these tests, due to their unregulated status. The potential for false positives, egregious mislabeling as diagnostic rather than screening tests, and the fact that some private testing companies are providing their own information about Down syndrome to pregnant women and families must be addressed.

Jeff Shuren, M.D., J.D., Director of the FDA’s Center for Devices and Radiological Health, said, “While genetic non-invasive prenatal screening tests are widely used today, these tests have not been reviewed by the FDA and may be making claims about their performance and use that are not based on sound science.”

Together, GLOBAL, NDSC, and NDSS publish the Prenatal Testing and Information about Down Syndrome (PTP), the nation’s most widely distributed pamphlet about NIPS and Down syndrome.

An important updated version of the PTP will be released this summer to reflect the FDA’s concerns and include information about and links to the 2022 Health Supervision for Children and Adolescents with Down Syndromepublished by the American Academy of Pediatrics just last week.

“We believe that it is important for parents to have, and physicians to provide, accurate, up-to-date information so that patients make decisions based on facts, not fear,” said David Tolleson, Senior Advisor Strategic Alliances at GLOBAL.

“It is very important that the public understands the limitations of these screening tests,” added Jordan Kough, Executive Director of NDSC. “In some cases, decisions are being made based on inaccurate information.”

“The FDA has warned that advertisements claiming these types of tests are ‘reliable,’ ‘highly accurate,’ and ‘offer peace of mind,’ may not be supported with sound scientific evidence,” concurred Kandi Pickard, President & CEO of NDSS. “This warning proves that, now more than ever, it is important to get accurate information – like our joint PTP – into the hands of doctors and pregnant women and families.”

Patients, healthcare providers, and the public may download the Prenatal Testing and Information about Down Syndrome pamphlet for free in English, Spanish, or Icelandic at each organization’s website. Print copies are available upon request.

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Global Down Syndrome Foundation (GLOBAL)
The Global Down Syndrome Foundation is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.

National Down Syndrome Congress (NDSC)
The National Down Syndrome Congress is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome.

National Down Syndrome Society (NDSS)
The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome.

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Press Contacts:

GLOBAL:
Anca Elena Call
acall@globaldownsyndrome.org
(720) 320-3832

NDSC:
Rhonda Rice
rhonda@ndsccenter.org
(678) 770-6641

NDSS:
Michelle Sagan
media@ndss.org
(301) 728-0447