For Immediate Release:
Anca Elena Call | acall@globaldownsyndrome.org | C: (720) 320-3832

DENVER, CO – (July 13, 2021) Today, the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies (Labor-HHS) approved their fiscal year 2022 funding bill which includes a $15 million funding increase for the National Institutes of Health’s Investigating Co-Occurring Conditions Across the Lifespan to Understand Down Syndrome (INCLUDE) initiative and related Down syndrome research.

Global Down Syndrome Foundation (GLOBAL) and our nationwide network of community advocates successfully advocated for the establishment of a trans-NIH Down syndrome research initiative in the fiscal year 2018 budget and have secured funding increases for the initiative in each year since its establishment.

GLOBAL is deeply grateful for the support and leadership of House Appropriations Committee Chair Rosa DeLauro (D-CT), Labor-HHS Subcommittee ranking member Tom Cole (R-OK), Rep. Lucille Roybal-Allard (D-CA), Rep. Jaime Herrera Beutler (R-WA), Assistant Speaker Katherine Clark (D-MA), Rep. Cheri Bustos (D-IL) and all the members of the committee who supported this year’s increase. The full House Appropriations Committee are planning to vote on the funding legislation this Thursday, July 15th, and it is likely to be considered by the House of Representatives by the end of July.

GLOBAL has led a multi-year, international advocacy campaign to build awareness among policymakers regarding unparalleled scientific opportunities related to the presence of three copies of chromosome 21 (instead of two), which causes Down syndrome. This leads to a radically different disease spectrum for people with Down syndrome, as these individuals are predisposed to or protected from major diseases that are the cause of death for over of 50% of Americans.

Thanks to GLOBAL’s leadership, a bipartisan, bicameral group in Congress included language in the fiscal year 2018 spending bill that asked the National Institutes of Health to launch a trans-NIH program led by the Office of the NIH Director to harness the power of multiple institutes to expand the science around Down syndrome and co-occurring conditions like cancer, diabetes, and Alzheimer’s disease.

The INCLUDE Initiative has been a resounding success, run out of the Office of the NIH Director with support from NIH Champions Drs. Francis Collins, Lawrence Tabak, Diana Bianchi, Gary Gibbons, and other institute directors such as Dr. Richard Hodes. The initiative has led to breakthrough and significant advances in our understanding of immune system dysregulation, new studies focused on the increased prevalence of Alzheimer’s disease among individuals with Down syndrome, and the creation of national Down syndrome Data Coordinating Center, all of which will dramatically improve the health and quality of life of individuals with Down syndrome as well as millions of individuals who do not have Down syndrome. Increased funding will help researchers pursue some of the most neglected areas of research and care such as health disparities for African Americans with Down syndrome, mosaic Down syndrome, those with the dual diagnosis of Down syndrome and autism, and new studies on metabolic research dysregulation.


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 medical care. GLOBAL has a membership of over 130 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 Down Syndrome WorldTM magazine. GLOBAL also organizes the annual AcceptAbility Gala, and 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).

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June 2021 Newsletter

June 29th, 2021 by Ben Enyart

Exclusive Natasha Bedingfield Performance – Your June Newsletter

WITH A PERFORMANCE BY GRAMMY-NOMINATED MULTI-PLATINUM SINGER-SONGWRITER NATASHA BEDINGFIELD


DENVER, CO – (June 10, 2021) – Today, Global Down Syndrome Foundation announced its annual AcceptAbility Gala will take place virtually on Wednesday, July 21, 2021 from 7:00pm to 8:30pm ET. GLOBAL will present its prestigious Quincy Jones Exceptional Advocacy Award to Congresswoman Lucille Roybal-Allard (D-CA) and Congresswoman Jaime Herrera Beutler (R-WA) for their unwavering support for Down syndrome research and medical care, and honor GLOBAL Ambassador Caroline Cardenas.

Key Speakers will include Congresswoman Rosa DeLauro (D-CT), Congressman Tom Cole (R-OK), Congresswoman Cathy McMorris Rodgers (R-WA), and Congressman Pete Stauber (R-MN). Other key supports include: Senator Roy Blunt (R-MO), Delegate Eleanor Holmes Norton (D-DC), Congressman Pete Sessions (R-TX), Congresswoman Cheri Bustos (D-IL), Assistant Speaker Katherine Clark (D-MA), and Senator Chris Van Hollen (D-MD). See the full list of this year’s Gala Congressional Committee here.

Grammy-nominated, multi-platinum singer-songwriter Natasha Bedingfield will give an intimate performance, and the event will be capped off with an inspirational set by performances by unified dance troupe RhythmXpress and soloist Robert Wallop.

The Gala brings together policymakers from both sides of the aisle, key scientists from NIH, and the Down syndrome community. The community’s support for this inspiring event allows GLOBAL to protect people with Down syndrome from COVID-19; provide world-class care to over 2,000 patients with Down syndrome from 28 states and 10 countries; and fund over 200 scientists working on Down syndrome research with a focus on Alzheimer’s disease, cancer, and autoimmune disorders. With support from our champions, GLOBAL’s advocacy efforts on Capitol Hill has resulted in a quadrupling of the NIH Down syndrome research and medical care budget in the last four years, as well as outreach to over 14,000 families.

The Gala will kick off via a Live Zoom VIP Reception from 7:00pm – 7:30pm ET with a live performance from multi-platinum singer-songwriter Natasha Bedingfield and short Q&A including Champions in Congress. The VIP reception is available for VIP Ticketholders and Table Sponsors.

From 7:30pm – 8:30pm ET the entertaining, fast-moving virtual program will feature presentations from Congresswomen Rosa DeLauro (D-CT) and Cathy McMorris Rodgers (R-WA); Acceptance Speeches from Congresswomen Lucille Roybal-Allard (D-CA) and Jaime Herrera Beutler (R-WA); Keynote from Congressman Pete Stauber (R-MN); Ambassador Caroline Cardenas; Other Congressional Speakers with Self-advocates with Down syndrome; and Musical and Dance Performances.

Down syndrome is the leading cause of developmental delay in the U.S., yet it is often overlooked by the federal government. The Global Down Syndrome Foundation is the lead advocacy non-profit working with self-advocates, congressional champions, and the National Institutes of Health to advance Down syndrome research that will lead to elongation of life and improved quality of life.

For more information visit  https://www.globaldownsyndrome.org/2021-acceptability-gala/.


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 medical 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 Down Syndrome WorldTM magazine. 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).

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CU Anschutz researchers developing drug in the fight against Alzheimer’s

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GLOBAL DOWN SYNDROME FOUNDATION ANNOUNCES 2021 QUINCY JONES EXCEPTIONAL ADVOCACY AWARD RECIPIENT AND INITIAL CELEBRITY LINEUP FOR THE 13TH ANNUAL BE BEAUTIFUL BE YOURSELF FASHION SHOW

Press Contact: Anca Call | acall@globaldownsyndrome.org | C: 720-320-3832

DENVER, MAY 27, 2021 – Today, Global Down Syndrome Foundation (GLOBAL) announced its Ambassadors and its initial celebrity lineup for the virtual Be Beautiful Be Yourself Fashion Show set for Saturday, November 13. The marquee event is the largest fundraiser for Down syndrome in the world, raising over $22 million to date for life-saving and transformative research and medical care. Models with Down syndrome, Hollywood celebrities, renowned athletes, and philanthropists from all over the world will join GLOBAL to be inspired and to raise funds for people with Down syndrome.

During the fashion show, 27 brilliant and beautiful models with Down syndrome will rock the runway. The event will honor GLOBAL Ambassadors Archie & Sevy Eicher. Archie and Sevy were born in Bulgaria and were adopted by loving parents Lisa and Joey. Archie is an active 17-year-old high school student and a famous model who was recently featured in Gap’s “Nxt Gen” and “Generation Good” campaigns. Sevy is twelve and an incredibly accomplished artist. Her paintings have a very long waiting list and her studio, Sandal Gap Studio has become a destination for artists with disabilities. Archie and Sevy are surrounded by a very loving family, including siblings Ace and Radko.

“We are so proud that Archie and Sevy are GLOBAL Ambassadors and that our family can support the amazing work of Global Down Syndrome Foundation,” says Lisa Eicher. “They still talk about being models in 2019 and what it was like to walk down that runway. And even virtually, this event is truly magical.”  

The fashion show will also feature 2021 Quincy Jones Exceptional Advocacy Award recipient Bryan Russell Mujica. Bryan made history in 2019 when declaring his candidacy for the Peruvian Congress. When he entered the race, he became the first person with Down syndrome in the world to run for public office. Bryan’s political endeavors are reflected in an upcoming documentary, “El Candidato (The Candidate),” which follows his journey on the campaign trail.

Confirmed celebrities for GLOBAL’s Be Beautiful Be Yourself Fashion Show include: award-winning actors John C. McGinley, Caterina Scorsone, and Eric Dane, award-winning reporters and TV anchors Kyra Phillips, John Roberts and Kim Christiansen; supermodel Amanda Booth; and professional sports stars Brandon McManus, Justin Simmons and Harrison Phillips. A full roster of celebrities will be announced in the coming weeks.

The fashion show will take place virtually this year. “People with Down syndrome are high risk for COVID-19, so we decided to err on the side of caution and hold the fashion show virtually this year,” says Michelle Sie Whitten, GLOBAL President and CEO. “We promise it will still be fast-paced, beautiful, inspiring, and informative. We lost many people to COVID last year so we deeply appreciate everyone’s continued understanding and support as we turn this corner together.”

Despite the pandemic, GLOBAL has delivered on many important initiatives:

Proceeds from the Be Beautiful Be Yourself Fashion Show support the important work of GLOBAL and GLOBAL’s affiliates, including a team of over 200 scientists working on breakthrough life-saving research at the Linda Crnic Institute for Down Syndrome and a dream team of medical professionals providing excellent medical care to over 2,000 patients from 28 states and 10 countries at the Anna and John J. Sie Center at Children’s Hospital Colorado.

To learn more, visit: www.bebeautifulbeyourself.org
To buy tickets, visit: https://bebeautifulbeyourself.org/2021-beautiful-fashion-show-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 medical 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 Down Syndrome WorldTM magazine. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).