Understanding the Impact of Immune Dysregulation in COVID-19 Patients with Down Syndrome May Lead to Tailored Prevention, Diagnosis and Treatment

Press Contacts:

Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494

September 25, Denver, CO – Researchers at the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus (Crnic Institute) have been awarded three grants totaling $1 million, two from the National Institutes of Health (NIH) and one from Fast Grants, to understand how the hyper inflammatory state of the immune system in people with Down syndrome may result in more severe complications upon SARS-CoV-2 infection. Studying both people and mouse models, the aim is to develop tailored COVID-19 prevention, diagnosis, and treatment for individuals with Down syndrome.

Preliminary data suggests people with Down syndrome are more likely to be hospitalized and die at a younger age due to COVID-19 compared to the typical population. However, much more information is needed, and currently little is known about how COVID-19 affects individuals with Down syndrome.

“What our research has already shown is that people with Down syndrome have substantial dysregulation in their immune systems, which could impact not only their initial response to SARS-CoV-2 and their clinical outcome if they become ill with COVID-19, but also the development of potential long term side effects. Understanding each of these pieces is crucial for understanding the risks and developing proper medical care for people with Down syndrome who get COVID-19,” explains Dr. Joaquín Espinosa, Executive Director of the Crnic Institute.

The NIH and Fast Grants awards build upon the following important coalescing factors:

1. The Crnic Institute’s breakthrough discovery that people with Down syndrome are
   affected by chronic autoinflammation.
2. Patients with COVID-19 who have severe symptoms or die have hyperactive
   inflammation similar to that observed in people with Down syndrome.
3. A class of FDA-approved drugs called “JAK-inhibitors” (such as Olumiant, Xeljanz, and
   Jakafi) are being evaluated world-wide to treat patients with COVID-19, and the Crnic Institute is testing Xeljanz to treat autoimmune and hyper inflammatory skin diseases in people with Down syndrome.

More specifically, these awards will allow Crnic Institute researchers to create an unprecedented body of knowledge by aggregating information and samples from individuals with Down syndrome diagnosed with COVID-19 through its Human Trisome ProjectTM data set and the National COVID Cohort Collaborative (N3C). In addition, Crnic Institute researchers will also test the ability of JAK inhibitors to normalize the hyper inflammatory state in a mouse model of Down syndrome.

“We are grateful to the NIH for identifying people with Down syndrome as a high risk population for COVID-19, and for acting quickly to fund research that could help save the lives of our children and adults from this terrible virus,” says Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation, an internationally renowned advocacy non-profit and an affiliate of the Crnic Institute. “Global, and the people with Down syndrome we serve, are also fortunate to have our congressional champions and our Crnic Institute scientists who are both brilliant and compassionate.”

About the Linda Crnic Institute for Down Syndrome
The Linda Crnic Institute for Down Syndrome is one of the only academic research centers fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute supports a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook and Twitter @CrnicInstitute.

About the 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 28 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 150 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 Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome World^TM. GLOBAL 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).

At the Global Down Syndrome Foundation (GLOBAL), we are simultaneously saddened and enraged by the tragic death of Nathaniel Julius, a 16-year-old with Down syndrome from Eldorado Park South Africa, who was shot and killed earlier this week during a police/gang-related shootout. Today, two officers involved in the shooting were arrested and charged with the murder of Nathaniel. We hope that the people responsible for this senseless killing are brought to justice. Our hearts go out to Nathaniel’s family, friends, and community during this difficult time.

*(As seen in GLOBAL’s social media on September, 1st). GLOBAL continues to follow the Nathaniel Julius case, as the now three suspected officers face the courts. We hope justice is served and our hearts go out to Nathaniel’s family and the community. See GLOBAL’s social media to keep up to date on this story.

Amidst the COVID-19 pandemic, GLOBAL helps provide economic support, shelter, food, and medical care to Down Syndrome Organizations and the Families they serve in 23 states and 4 countries

Press Contacts:

Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832 Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494

DENVER, CO July 23, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) will provide over $116,000 in COVID-19 Emergency Relief Global Grants (GLOBAL Grants). The grants support over 140 families and 42 Down syndrome organizations in 23 states and 4 countries (Albania, Honduras, Kosovo, and Uganda). GLOBAL Grants are providing food, medical care, shelter support, and other critical assistance to individuals with Down syndrome and their families facing crises during the COVID-19 pandemic.

“GLOBAL is struggling financially too but we decided to convert our educational grants to COVID-19 emergency grants because the need is so great right now, and we simply needed to tap our reserves and help our Down syndrome community,” says Michelle Sie Whitten, GLOBAL President and CEO. “We didn’t think we could fund the overwhelming number of family grants but with the incredible generosity of The Salah Foundation, a private invitation-only foundation, we were able to fund every single one. My staff were literally crying as they read the applications and we feel beyond blessed to provide some modest relief.”

Below are some examples of the GLOBAL Grants:

• In St. Louis, a grandmother and her two grandchildren who she adopted, one of whom has Down syndrome, were left homeless for four months due to limited resources and social support during this time. The GLOBAL Grant was able to pay the rent to help the family get back on their feet.
• In Albania, desperately-needed food packages were sent to 56 individuals with Down syndrome and their families that will help them get through the winter as jobs and government support have dried up.
• In West Michigan, a father who is a disabled veteran and a mother who was temporarily laid off from her special education job due to COVID-19 could not pay their medical bills for their child with Down syndrome who recently had heart surgery. The GLOBAL Grants provided important interim relief for the family of six.
• In Atlanta, the GLOBAL Grant helped keep the lights on at Adult Disability Medical Healthcare allowing the clinic to continue to provide critical and high-quality care virtually to their patients including care associated with COVID-19.

“Many of our donors have frozen their support, project grants have been postponed, and unfortunately, our government left the non-profit sector out of financial support packages,” says Emanuela Zaimi, Executive Director of Down Syndrome Albania Foundation. “Feeling hopeless and exhausted, we needed support and luckily GLOBAL stepped in and provided this amazingly generous grant, making a world of difference for 56 families of our community. We are very grateful to GLOBAL and to anyone who contributes to its mission, as this help reaches us too!”

Martine Hobson, Executive Director of Down Syndrome Association of Memphis & the Mid-South, says, “We’ve been GLOBAL members for years. To see how they’ve supported Down syndrome organizations on a national scale and now supporting us in this very personalized way is a testament to their leadership and dedication to every person with Down syndrome.

“I am so proud to be part of the GLOBAL team during this crisis,” says Ashley Sparhawk, GLOBAL Grants Program Manager. “It took a lot of time and work, but we have a wonderful GLOBAL Membership Advisory Board that helped and the generous Salah Foundation gift. At GLOBAL, we feel personally connected to all the professionals and families that are struggling through this difficult time and we are doing everything we can to lend a helping hand.”

The following 42 organizations received GLOBAL Grants:

GLOBAL is working hard to protect and support people with Down syndrome during the pandemic. In addition to providing COVID-19 Emergency Relief Global Grants, GLOBAL is creating important resources like the Down syndrome/COVID-19 Q&A, and supporting legislation that prohibits discrimination so that people with Down syndrome and other disabilities can receive COVID-19 medical care in the event there is medical care rationing. Most recently, GLOBAL provided over 31,000 pieces of personal protective equipment (PPE) to people with intellectual and developmental disabilities who are wards of the state in Colorado.

To get the latest COVID-19 information and GLOBAL resources, visit www.globaldownsyndrome.org/covid-19

To learn more about GLOBAL’s membership program, visit www.globaldownsyndrome.org/become-a-member/

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 28 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 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).

SPRING 2020

Government Funding for Down Syndrome Research Triples – What This Could Mean for Children & Adults with Down Syndrome

What You Need to Know

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Overview

The exciting new Down syndrome research at the National Institutes of Health (NIH) and the NIH INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). How families and Down syndrome organizations can participate in, and benefit from research. How to use powerful medical registry resource, DS-Connect®, under the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), and learn about research opportunities. A new clinical trial aimed at normalizing immune function in Down syndrome to cure autoimmune skin conditions and improve cognitive function and quality of life. The Crnic Institute Human Trisome ProjectTM, the most ambitious dataset for people with Down syndrome that serves as a discovery engine aimed at the diseases that people with Down syndrome are highly predisposed to (e.g. Alzheimer’s disease and autoimmune disorders) and protected from (e.g. solid tumor cancers).

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Speakers

Dr. Melissa Parisi Chief, Intellectual & Developmental Disabilities Branch, Eunice Kennedy Shriver NICHD National Institutes of Health (NIH), DS-Connect® Registry Manager

Dr. Joaquín Espinosa Executive Director, Linda Crnic Institute for Down Syndrome, Professor of Pharmacology, University of Colorado

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PDF Presentation: Download Government Funding for DS Research

Dr. Melissa Parisi

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PDF Presentation: Download Scientific Research in the INCLUDE Era

Dr. Joaquín Espinosa

GLOBAL Webinars Archive

Jamie Foxx, DeOndra Dixon, Caterina Scorsone, John C. McGinley, Walt Snodgrass and more support the World’s Largest Event Benefitting People with Down Syndrome

Press Contacts:

Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832 Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494

DENVER, CO June 30, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced an impressive roster of dedicated celebrity supporters for its marquee Be Beautiful Be Yourself Fashion Show scheduled for Saturday, October 3. The annual event is the largest fundraiser for Down syndrome in the world, raising over $20 million to date for life-saving and transformative research and medical care.

The star-studded roster includes Academy and Grammy Award winner Jamie Foxx; award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, Megan Bomgaars, and Caterina Scorsone; Denver Broncos’ Brandon McManus, world-renowned swimmer Karen Gaffney, and Colorado Rapids’ Kellyn Acosta; award-winning speakers, journalists, and TV anchors DeOndra Dixon, Frank Stephens, Kyra Phillips, John Roberts, Kim Christiansen, and Tom Green; R&B power couple Ronnie & Shamari DeVoe; and supermodel Amanda Booth. A full roster of celebrities will be announced in the coming weeks.

The event will honor GLOBAL Ambassador Walt Snodgrass from Omaha, Nebraska. Walt is a sophomore at Westside High School, where he is fully included. He runs track and plays in the school band, and is part of “Sparklers” Cheer and the unified bowling team. Walt is a staunch advocate for inclusion. His contributions to his family and community, his zest for life, and compassion for others make him beloved wherever her goes. “I love modeling in GLOBAL’s fashion show in Denver, showing the world what people with Down syndrome can do. Together, we are changing the world,” says Walt. During the fashion show, 20 brilliant and beautiful models with Down syndrome will rock the runway, including GLOBAL’s Ambassador.

“At GLOBAL we are taking COVID-19 very seriously, and we are closely monitoring and following government guidelines to determine the format of the fashion show,” says Michelle Sie Whitten, GLOBAL President and CEO. “As of now, we are planning a smaller in-person event and a larger virtual component that we hope will be every bit as magical and inspiring.”

In response to the COVID-19 pandemic, GLOBAL has been a leader for the Down syndrome community – creating important resources like the Down syndrome/COVID-19 Q&A and supporting legislation that prohibits discrimination so that people with Down syndrome and other disabilities can receive COVID-19 medical care in the event there is medical care rationing. GLOBAL also provided COVID-19 Emergency Relief Global Grants to over 100 individuals with Down syndrome and their families needing food, medicine, and shelter, and most recently GLOBAL provided over 31,000 pieces of personal protective equipment (PPE) to people with intellectual and developmental disabilities who are wards of the state in Colorado.

Proceeds from GLOBAL’s Be Beautiful Be Yourself Fashion Show underwrite GLOBAL’s direct help to the community, excellent quality health care to over 2,000 patients with Down syndrome from 28 states and 10 countries, and transformative research focused on the relationship between Down syndrome and Alzheimer’s disease, solid tumors, autoimmune disorders and more.

To support GLOBAL’s work, please consider a donation.

To learn more, visit: www.bebeautifulbeyourself.org

To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/

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 28 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 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).