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GLOBAL Ambassador Grace Brennan, a Successful Dance Recital, Mother’s Day Appreciation, Alzheimer’s Breakthrough, and more – Your May Newsletter!

The Global Down Syndrome Foundation is attending and presenting at the 21^st annual American Academy of Developmental Medicine & Dentistry (AADMD) One Voice Conference, May 4-7, at the Westin Denver International Airport

Today, May 5, 2023, GLOBAL and self-advocate Taylor Shelsta will graciously accept the AADMD “Local Hero” award recognizing the outstanding work and dedication to inclusive health exhibited in the groundbreaking Medical Care Guidelines for Adults with Down Syndrome (GLOBAL Adult Guideline). The GLOBAL Adult Guideline provides first-in-kind, evidence-based medical recommendations to support clinicians in their care of adults with Down syndrome. An accessible family-friendly version for non-medical professionals is available for free download on the GLOBAL website.

“GLOBAL is honored to receive AADMD’s Local Hero award,” says Bryn Gelaro. “Dr. Tyler and many other AADMD members were a pivotal resource for us when creating the GLOBAL Medical Care Guidelines for Adults with Down Syndrome. Together, we are taking steps towards making healthcare a more inclusive place for adults with Down syndrome.”

GLOBAL Research & Medical Care senior director Bryn Gelaro was joined by the AADMD president and GLOBAL Guideline author, Dr. Carl Tyler, the medical director for Denver Health and GLOBAL Adult Down Syndrome Pilot Clinic, Dr. Barry Martin, and GLOBAL self-advocate, Connor Long, to present GLOBAL’s Adult Guideline. The panel titled “Show Me the Evidence! Newest Health Care Guidelines for Adults with Down syndrome” took place today from 1:40 PM to 2:40 PM MST.

The 2023 AADMD One Voice Conference is centered around navigating uncertainty and preparing for inclusive care in any circumstance. The four-day conference had various panels and breakout sessions discussing how to prepare for, pivot and pilot inclusive health.

GLOBAL is honored to be partnering with AADMD on various projects that will help medical professionals, self-advocates and families access valuable resources that will inform quality medical care practices for people with Down syndrome.

The GLOBAL Down Syndrome Foundation (GLOBAL) is proud to endorse the Words Matter Act that is being reintroduced by U.S. Representatives Mark Pocan (WI-02), Pete Sessions (TX-17), Eleanor Holmes Norton (DC) and Cathy McMorris Rogers (WA-05). The bipartisan legislation will remove more than two dozen instances of “mentally retarded” from federal law, replacing the outdated language with terminology that is appropriate for people with Down syndrome and other intellectual and developmental disabilities. Removing these harmful words from the U.S. Code will modernize our laws and encourage more respectful conversations surrounding individuals with Down syndrome.

This important legislation builds upon the 2011 “Rosa’s Law” (P.L. 111-256) which struck “mental retardation” from federal law. GLOBAL was proud to be among the first to endorse that bill and is honored to be a lead supporter of the Words Matter Act.

We applaud and are grateful to Reps. Mark Pocan (WI-02), Pete Sessions (TX-17), Eleanor Holmes Norton (DC), and Cathy McMorris Rogers (WA-05). As GLOBAL Congressional champions they are supporting GLOBAL’s work to increase NIH funding that is resulting in elongated life and improved health outcomes for people with Down syndrome.

Other resources:

Words Can Hurt

John C. McGinley’s Essay on the R-Word

GLOBAL CALLS OUT NETFLIX for anti-disability, anti-Down syndrome rhetoric

GLOBAL’s Response to Kanye West Using the ‘R’ Word

GLOBAL Advocacy in DC, Employment Awards, Support from Congressman Crow, Devil’s Advocate Interview, and more – Your April Newsletter!

New Research Capability Will Accelerate Breakthrough Immune System Dysregulation Research in People with Down Syndrome

DENVER – Thursday, April 27 – Today, the Global Down Syndrome Foundation (GLOBAL) announced its affiliate, the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus (Crnic Institute), has acquired a $950,000 state-of-the-art Immune Monitoring Station thanks to Community Project Funding that Congressman Jason Crow (CO 6^th District) secured as part of the Fiscal Year 2022 appropriations legislation.

The Immune Monitoring Station will significantly accelerate the pace of research discoveries at the Crnic Institute as well as treatments that lead to improved health outcomes for people with Down syndrome.

“This equipment will be used to better understand how the chronic inflammatory state in people with Down syndrome predisposes them to multiple co-occurring diseases,” said Dr. Joaquín Espinosa, executive director at the Crnic Institute. “Thanks to Rep. Crow’s work, and the government advocacy of Michelle Sie Whitten and the GLOBAL team, Down syndrome research at the Crnic Institute can be completed a lot faster.”

Specific co-occurring diseases to be analyzed with the Immune Monitoring Station include transient myeloproliferative disorder, lymphocytic and myeloid leukemias, autoimmune thyroid disease, autoimmune skin diseases, celiac disease, seizure disorders, developmental regression, autism spectrum disorder, pulmonary hypertension, dysphagia/aspiration and Alzheimer’s disease.

Dr. Huntington Potter, professor of neurology and director of Alzheimer’s disease research at the Crnic Institute with GLOBAL self-advocates

“We are deeply grateful for Congressman Crow’s commitment and support for GLOBAL’s work to advance research that is transforming the lives of the amazing people with Down syndrome we serve,” said GLOBAL President & CEO, Michelle Sie Whitten. “We are proud to have the Crnic Institute, the epicenter of national and international Down syndrome research and medical care, right here in Colorado.”

The Crnic Institute Community Project Funding request made by Rep. Crow was also championed through letters of support from the University of Colorado School of Medicine, Rocky Mountain Down Syndrome Association, Colorado Springs Down Syndrome Association, Make-A-Wish Foundation, Rise School, Easter Seals Colorado, Colorado Cross Disability Center and ArcThrift.

“The Crnic Institute and GLOBAL are advancing life-changing science that is elongating life and improving health outcomes for those with Down syndrome,” said Rep. Crow. “I’m thrilled we are able to help them make important investments in their research infrastructure that will boost their efforts to better understand diseases like Alzheimer’s and solid tumor cancers and find new and better treatments.”

The Crnic Institute is the largest center for Down syndrome research in the world, with more than 50 research teams and 200+ scientists involved. In 2016, with support from GLOBAL, Dr. Joaquín Espinosa and his scientific team made the groundbreaking discovery that people with Down syndrome experience chronic immune system dysregulation. Due to this discovery, the Crnic Institute was granted an unprecedented NIH-funded clinical trial using FDA drugs that normalize the immune system in people with Down syndrome

People with Down syndrome have three copies of chromosome 21 instead of two. Because of one extra chromosome, people with Down syndrome have a very different disease spectrum than others. People with Down syndrome are highly predisposed to certain diseases (such as Alzheimer’s and autoimmune disorders) and highly protected from others (such as solid tumors and certain types of heart attack or stroke).

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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 2,200 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 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the 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 Syndrome, Prenatal & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World^TM . 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).