Archive for the ‘Press Releases’ Category

Global Down Syndrome Foundation Honored Reps. Hudson and Frankel at Event that Featured Grammy-Nominated Singer and Actress Jordin Sparks and an Inclusive Dance Troupe

Denver, CO, May 10, 2024 –Last night the Global Down Syndrome Foundation (GLOBAL) held its sixth annual AcceptAbility Gala, DC’s largest fundraiser for people with Down syndrome, that raised $400,000 to support important research and medical care to improve the lives of those who happen to have Down syndrome. Representatives Richard Hudson (R-NC) and Lois Frankel (D-FL) received GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award, and pledged their continued strong advocacy in Congress that makes an impact on the lives of people with Down syndrome and their families.

“At GLOBAL, we are working hard every day to elongate life and improve health outcomes for our loved ones with Down syndrome,” says GLOBAL Co-Founder, President, and CEO, Michelle Sie Whitten. “Last night we brought together a room full of bi-partisan support  from Congress, NIH leadership, self-advocates with Down syndrome, and corporate leaders, all celebrating the impact of GLOBAL’s work. The joy and excitement at our event and the tangible outcome of our work together is truly rewarding!”

Held at the Marriott Marquis in Washington, DC, the event was attended by GLOBAL awardee alum, Representative Cathy McMorris Rodgers (R-WA) and her son, GLOBAL Ambassador Cole Rodgers. Representative Rodgers’ keynote speech deeply moved the audience. Her determination to pass a game-changing legacy bill, the DeOndra Dixon INCLUDE Project Act, before her poignant retirement from Congress was an important feature of the evening. The bill will help ensure funding for Down syndrome research and medical care from the NIH for years to come.

Celebrities passionate about the cause included Grammy-nominated, multi-platinum singer/songwriter and actress Jordin Sparks; actor, author and public speaker Frank Stephens; author and public speaker David Egan; and award-winning correspondent for ABC News and anchor for ABC News LIVE Kyra Phillips and her daughter Sage Roberts.

To recognize the transformative leadership of Representative Rosa DeLauro (D-CT), the GLOBAL Rosa DeLauro Advancement Award, with a post-secondary scholarship, was provided to Damani Tichawonna from Washington, DC as was the GLOBAL Tom Cole Advancement Award to Julia Greene. Representative Rosa DeLauro was on-hand to personally present both Advancement Awards to the deserving recipients, leaving the audience inspired to do even more for people with Down syndrome and their families.

With the help of GLOBAL Ambassador Isla Eager and her family, Erin Book Mullen, and co-chairs Julie Riccio and Amy Best Weiss, the inspirational gala attracted 300 attendees and raised $400,000 for GLOBAL’s life-saving research and medical care. GLOBAL supports over 200 researchers on the Anschutz Medical Campus at the Crnic Institute for Down Syndrome and at the Alzheimer’s and Cognition Center, as well as  2,500 patients from 33 states and 10 countries at the Sie Center for Down Syndrome. For nearly two decades, Down syndrome was one of the least federally funded genetic conditions in the United States.

“People with Down syndrome enrich our world in unique ways,” says Representative Hudson. “GLOBAL is paving the way for people who are differently-abled so they can live their lives to their full potential with no barriers or bias or obstacles standing in their way. I am honored to support their efforts and to receive this award, and will continue advocating for policies that improve the lives of people with Down syndrome.”

“It was an honor to be with so many great advocates for Down syndrome and to receive such a generous recognition,” says Representative Frankel. “I am proud to support GLOBAL’s mission of elongating life and improving health outcomes for people with Down syndrome. Their AcceptAbility Gala was an inspiring evening that reminds all of us that we must continue to make critical investments in Down syndrome research to uphold the health and dignity of every person.”

At the end of the evening, Jordin Sparks wowed the audience not only with her beautiful voice but by connecting with fans and bringing self-advocates with Down syndrome on stage while performing an intimate, heartfelt performance of some of her biggest hits including “No Air” and “One Step at a Time,” and  solo dancer Robert Wallop and inclusive dance troupe RhythmXpress delighted attendees with dance performances set to “Bones” by Imagine Dragons, “Firework” by Katy Perry and “Fireball” by Mini Pop Kids.

Additional notables in attendance included Kim Owens from the National Down Syndrome Congress and Dria Law from the Down Syndrome Association of Southern New Jersey .

To learn more about GLOBAL, visit www.globaldownsyndrome.org.

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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 2,400 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 medical care. GLOBAL has a membership of over 110 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 SyndromePrenatal & Newborn Down Syndrome Information, and the award-winning Down Syndrome World™ magazine. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.

Self-advocates to Receive the Rosa DeLauro & Tom Cole Advancement Awards & Local Dancers with Down Syndrome Showcase Talents

Denver, CO, April 17, 2024

The Global Down Syndrome Foundation (GLOBAL) is honoring Congresswoman Lois Frankel (D-FL) and Congressman Richard Hudson (R-NC), who will receive the Quincy Jones Exceptional Advocacy Awards for their work in  support for those with Down syndrome, during its annual AcceptAbility Gala. The gala is an inspiring fundraiser event taking place at the Marriott Marquis in Washington, DC on May 9th that features DC-area dancers who happen to have Down syndrome and other disabilities and a performance by Grammy-nominated, multi-platinum singer/songwriter and actress, Jordin Sparks.

“We are excited to highlight the extraordinary talents and gifts of people with Down syndrome at our AcceptAbility Gala.  It’s also a chance to honor those Members of Congress who have worked hard to ensure our community benefits from federally funded research that is improving their lives,” says Michelle Sie Whitten, President & CEO, Global Down Syndrome Foundation. “This year, we are thrilled to honor Rep. Hudson and Rep. Frankel for their unwavering support for people with Down syndrome and their families, and to thank Representatives Cathy McMorris Rodgers and Rosa DeLauro, both of whom will be in attendance, for their life-changing leadership.”

GLOBAL’s annual AcceptAbility Gala brings together policymakers from both sides of the aisle, key scientists from NIH, and the Down syndrome community. With GLOBAL’s leadership bringing together multiple stakeholders, the NIH Down syndrome research and medical care budget has increased by $338 million over the last six years. The AcceptAbility Gala is an opportunity to celebrate major new federal research funding increases after years of being one of the least funded genetic conditions and to educate Congress and the community about the transformative DeOndra Dixon INCLUDE Project Act of 2024 that will elongate life and improve health outcomes for people with Down syndrome.

During the gala, GLOBAL will honor 2024 GLOBAL Ambassador Isla Eager and her family from Arlington, Virginia and present the Rosa DeLauro & Tom Cole GLOBAL Advancement Awards to two self-advocates with Down syndrome. The awards come with a $1,000 each scholarship for post-secondary education. The 2024 Gala Chairs are Julie Riccio, Director of Regulatory Affairs and Public Policy, PwC, and Amy Best Weiss, Executive VP, Global Government Affairs, American Express. Congressional Hosts include Sen. Bob Casey, Sen. John Hickenlooper, Sen. Jerry Moran, Cong. Robert Aderholt, Cong. Katherine Clark, Cong. Tom Cole, Cong. Rosa DeLauro, Cong. Cathy McMorris Rodgers, Cong. Eleanor Holmes Norton, Cong. Pete Sessions, and Cong. Pete Stauber. This year’s event has 89 Members of Congress supporting it as well as the Honorary Congressional Committee. The AcceptAbility Gala is co-emceed by husband and wife team—Fox News’ John Roberts and ABC’s Kyra Phillips.

Other leaders who are participating include Frank Stephens, GLOBAL board member, GLOBAL Ambassador, self-advocate and actor, from Fairfax, VA; David Egan, Quincy Jones Awardee, gala event committee, self-advocate and author, from Vienna, VA; Robert Wallop, soloist dancer and self-advocate, from Annapolis, MD; Jan Adams, Founder & CEO JMA Solutions; Cory Alexander, Strategic Advisor, UnitedHealth Group; John Ashbrook, Founding Partner, Cavalry LLC; Kevin Brennan, Principal, Bluebird Strategies; Natalie Farr Harrison, SVP Government Relations, Avoq; Erin Book Mullen, Principal, Williams & Jensen, PLLC, Ed Mullen, Partner, Narrative Strategies; Matthew Perin, Head of Government Relations and Regulatory Affairs, Kroger; Cliff Riccio, Senior Vice President & Chief, Government Relations, NCTA; and Salo Zelermyer, Vice President for Federal Affairs and Counsel, Valero; and Dr. Joaquín Espinosa, Executive Director, Linda Crnic Institute for Down Syndrome.

The AcceptAbility Gala supports the Global Down Syndrome Foundation, funding life-changing research and lifesaving medical care for children and adults with Down syndrome. Down syndrome is the most frequent chromosomal condition, affecting an estimated 400,000 Americans, but it has been one of the least-funded genetic condition by NIH. GLOBAL is focused on raising funds to support research, educating the public about the discrepancy in research funding, and showcasing the abilities of those with Down syndrome. It is the largest US non-profit working to save lives and dramatically improve health outcomes for people with Down syndrome.

The AcceptAbility Gala starts at 6:00 p.m. with a reception and red carpet followed by dinner, a live auction, and performances by local individuals with Down syndrome and Jordin SparksTickets start at $500 and can be purchased online at www.globaldownsyndrome.org. To cover the event or receive photos or b-roll, contact Shawn Flaherty at 703-554-3609. For more information, visit www.globaldownsyndrome.org

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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 2,400 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 medical care. GLOBAL has a membership of over 110 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 SyndromePrenatal & Newborn Down Syndrome Information, and the award-winning Down Syndrome World™ magazine. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.

GLOBAL Quincy Jones Exceptional Advocacy Awardee and “Champions” Actress, Madison Tevlin, Delivers Another “Must See” Performance for World Down Syndrome Day

Denver, CO, Mar 27, 2024 — The Global Down Syndrome Foundation (GLOBAL) is proud to support the international awareness campaign video, “Assume That I Can,” that is taking the internet by storm! GLOBAL has financially sponsored and supported this annual campaign organized by CoorDown in Italy. This year’s campaign was created in collaboration with the New York-based agency SMALL.

The breakout star of the campaign video is “Champions” actress Madison Tevlin who received GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award in 2023. Madison and iconic film director Bobby Farrelly received their Quincy Jones Awards at the Be Beautiful Be Yourself Fashion Show, the largest fundraiser for people with Down syndrome in the world.

“We are so proud to be part of CoorDown’s annual awareness campaign video and to have Madison be the star of the film was just beyond perfect,” says Michelle Sie Whitten, GLOBAL President and CEO. “At GLOBAL we are working so hard to elongate life and improve health outcomes so we embrace this parallel theme of limiting perceptions. The video is exceptional, fantastic, wonderful – we hope it gets MILLIONS of views!”

World Down Syndrome Day falls on March 21st or “3-21” signifying the fact that people with Down syndrome are born with 3 (three) copies of chromosome 21 instead of 2 (two). World Down Syndrome Day was promulgated by the United Nations in 2012 and is celebrated in 190 countries. 

To learn more about the Global Down Syndrome Foundation and World Down Syndrome Day, visit www.globaldownsyndrome.org/world-down-syndrome-day-month.

Hashtags: #AssumeThatICan #WDSD24 #WorldDownSyndromeDay #Endthestereotypes 

#downsyndromerocks #dsrocks #downsyndromelove #downsyndromeawareness #t21 #globalrocks #downsyndromeworld #downsyndrome #nonprofit #denvernonprofit

 

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 2,400 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 medical care. GLOBAL has a membership of over 110 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 SyndromePrenatal & Newborn Down Syndrome Information, and the award-winning Down Syndrome World™ magazine. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.

Self-Advocates with Down Syndrome Share Their Stories & Inspire the World

DENVER, NYC, SANTIAGO, KAMPALA, March 12, 2024 – Today, the Global Down Syndrome Foundation (GLOBAL) announced the official launch of their “21 for 21” Campaign that is being generously matched by the Safeway Foundation. GLOBAL’s goal is to raise $21,000 of which 100% of the proceeds will go to life-saving medical care for patients with Down syndrome from 33 states and 10 countries.

The campaign uses Phone2Action so that self-advocates with Down syndrome can create their own website pages with their photos and story that aim to inspire and help GLOBAL raise critical funds. Supporters can set up their pages here in three easy steps.

As World Down Syndrome Day approaches on March 21 (3/21), GLOBAL is gearing up for several initiatives that celebrate inclusivity, diversity and advocacy for people with Down syndrome all over the world:

  1. New York City, USA – Holy See at the United Nations “Conference on Human Rights for People with Down Syndrome & Women
  • Thursday, March 21st featuring GLOBAL’s Board Member, Frank Stephens
  1. Denver, USA – World Down Syndrome Day Dance Party
  • Friday, March 22nd at the famous inclusive restaurant and bar, Brewability, 3445 S. Broadway, Englewood, Colorado
  1. Santiago, Chile – Health for Adults with Down Syndrome Workshop co-organized by GLOBAL, Centro UC Síndrome de Down and Pontificia Universidad Catholica de Chile
  1. Kampala, Uganda – World Down Syndrome Day Dance Party
  • Thursday, March 21st GLOBAL and the Global Livingston Institute are working with local Down syndrome and intellectual disability NGOS to organize this fun and inspiring event
  1. Important Video – GLOBAL’s World Down Syndrome Day Video featuring self-advocate from around the world
  1. “Assume That I Can” CoorDown Video Featuring Madison Tevlin
  • GLOBAL is proud to support this important video created by CoorDown in Italy

“We are so honored to be a part of World Down Syndrome Day initiatives in the US, Chile, Uganda, and Italy this year,” says GLOBAL President & CEO Michelle Sie Whitten. “We are now actively working in 10 countries translating and distributing our Prenatal & Newborn Pamphlet, GLOBAL Adult Guideline, and other important resources at no cost to thousands of people with Down syndrome and their families.” We could not do this without our wonderful in-country collaborators, the leaders on our GLOBAL Membership Advisory Board, and our transformative affiliates, families and champions. Everyone at GLOBAL works so hard it is lovely to have a day where everyone can just celebrate the awesome people with Down syndrome we serve!”

World Down Syndrome Day falls on March 21st or “3-21” signifying the fact that people with Down syndrome are born with 3 (three) copies of chromosome 21 instead of 2 (two). World Down Syndrome Day was promulgated by the United Nations in 2012 and is celebrated in 190 countries. 

To learn more about the Global Down Syndrome Foundation and World Down Syndrome Day, visit www.globaldownsyndrome.org/world-down-syndrome-day-month.

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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 2,400 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 medical care. GLOBAL has a membership of over 110 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 SyndromePrenatal & Newborn Down Syndrome Information, and the award-winning Down Syndrome World™ magazine. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.

The Energy & Commerce Health Subcommittee Favorably Reported the DeOndra Dixon INCLUDE Project Act of 2024 with Unanimous Support

DENVER – March 12, 2024—The Global Down Syndrome Foundation (GLOBAL) praised the House Energy and Commerce Health Subcommittee for approving the DeOndra Dixon INCLUDE Project Act of 2024 (H.R. 7406), which would authorize the INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE (INCLUDE) Project at the National Institutes of Health (NIH). 

The legislation will formally authorize a trans-NIH structure to ensure that major crosscutting issues and opportunities within Down syndrome research are identified and allow for multiple institutes to collaborate on a research plan. This will enable institute coordination to plan, fund, and share and disseminate research results that aim to improve health outcomes for those with Down syndrome.

GLOBAL is deeply grateful to their congressional champions who are co-sponsoring this important legislation: Representative Cathy McMorris Rodgers (R-WA) who formally introduced the game-changing DeOndra Dixon INCLUDE Project Act of 2024 with her colleagues Diana DeGette (D-CO), Tom Cole (R-OK), Rosa DeLauro (D-CT), Pete Stauber (R-MN) and Delegate Eleanor Norton Homes (D-DC) as original cosponsors.

2024 House Committee on Energy & Commerce Health Hearing: “Legislative Proposals To Support Patients And Caregivers

GLOBAL will be launching a digital campaign  this week to encourage supporters to contact their Representatives, tell their personal stories, and let them know that passing  this bill this year is imperative and important Visit www.globaldownsyndrome.org/advocacy for more information.

“Working with Congresswoman Cathy McMorris Rodgers has been one of the greatest honors of my life,” says Michelle Sie Whitten, GLOBAL President & CEO. “With this bill, named in memory of our beloved Ambassador DeOndra Dixon, Congresswoman McMorris Rodgers is helping to create a powerful future for a population that has been largely ignored and neglected. With her unwavering commitment and leadership, and with wonderful bipartisan support, our champions are ensuring the INCLUDE Project and Down syndrome research funding remains a national priority and that we will see increased lifespan and improved health as a result.”

Having advocated for the establishment of INCLUDE, GLOBAL continues to advocate for additional funding and programs that would help some of the most vulnerable populations within the Down syndrome community: including those living in rural America, Black or African Americans with Down syndrome and other minorities. There is some research that points to a significant disparity in lifespan for Black or African Americans with Down syndrome as compared to a Caucasian with Down syndrome.

The INCLUDE Project was established via congressional directive in 2018 after a seminal first-in-kind House Appropriations Labor, Health and Human Services, and Education Subcommittee hearing led by then-Chairman Cole Tom Cole and Ranking Member Rosa DeLauro. Congresswoman McMorris Rodgers was a key supporter at the hearing and testified along with Crnic Institute for Down Syndrome Executive Director, Dr. Joaquín Espinosa, and GLOBAL Board Member and self-advocate, Frank Stephens. Frank’s testimony that day, which included the famous phrase, “I am a man with Down syndrome and my life’s worth living,” went viral to 1 million views that day and today stands at well over 200 million.

Dr. Espinosa’s testimony focused on the fact that people with Down syndrome have a very different disease profile whereby they are highly predisposed to certain diseases (for example Alzheimer’s and certain autoimmune diseases) and highly protected from others (for example solid tumors). He also presented his groundbreaking study that categorizes Down syndrome as an immune system disorder and how by studying people with Down syndrome we can not only improve their lives but the lives of millions of others who suffer from diseases.

Before Congress began funding the NIH INCLUDE Project, Down syndrome was one of the least funded genetic conditions by the NIH despite being the leading cause of developmental delay in the U.S. and around the world. For nearly two decades the funding had languished between $16 million and $20 million even during years when there was a double-digit growth of the NIH budget. In 2023, the estimated INCLUDE budget is $144 million. GLOBAL’s advocacy goal is to increase funding to over $250 million a year.

GLOBAL Affiliate, the Crnic Institute for Down Syndrome, has five clinical trials specifically for patients with Down syndrome: Two in Alzheimer’s and Down Syndrome, one in Down Syndrome Regression Disorder, and two in autoimmunity and inflammation.

To read about the impactful research that the INCLUDE Project has funded visit the NIH Down Syndrome Coordinating Center Website at: https://includedcc.org/.

 

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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 WorldTM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual 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). 

The DeOndra Dixon INCLUDE Project Act of 2024, named after GLOBAL Ambassador and Quincy Jones Exceptional Advocacy Awardee DeOndra Dixon, is co-sponsored by Representatives Diana DeGette, Tom Cole, and Eleanor Holmes Norton 

Denver, CO, Feb. 08, 2024 (GLOBE NEWSWIRE) — The Global Down Syndrome Foundation (GLOBAL) is thrilled to share the news that long-time GLOBAL champion Representative Cathy McMorris Rodgers (R-WA) formally introduced the game-changing DeOndra Dixon INCLUDE Project Act of 2024 with Representatives Diana DeGette (D-CO), Tom Cole (R-OK) and Delegate Eleanor Norton Homes (D-DC) as original cosponsors.

The legislation to formally establish the INCLUDE (Investigation of Co-occurring conditions across the Lifespan to Understand Down syndrome) Project at the National Institutes of Health (NIH) is the culmination of years of tireless advocacy led by GLOBAL and including self-advocates with Down syndrome and their families, scientists and medical care professionals, and champions in Congress and at NIH.

“Working with Congresswoman Cathy McMorris Rodgers has been one of the greatest honors of my life,” says Michelle Sie Whitten, GLOBAL President & CEO. “With this bill, named in memory of our beloved Ambassador DeOndra Dixon, Congresswoman McMorris Rodgers is helping to create a powerful future for a population that has been largely ignored and neglected. With her unwavering commitment and leadership, and with wonderful bipartisan support, our champions are ensuring the INCLUDE Project and Down syndrome research funding remains a national priority and that we will see increased lifespan and improved health as a result.”

Michelle Sie Whitten & The Dixon/Foxx Family

“We are forever grateful to GLOBAL for creating such purpose for our little sister DeOndra,” says Academy Award-winning actor and DeOndra Dixon’s brother, Jamie Foxx. “My sister Deidra and I are so proud of the big difference she made through her advocacy in DC, and now with this bill she will continue to make a difference. There isn’t a day that goes by that we don’t miss her, but today I know she’s dancing up in heaven because this legislation is named after her and will help millions of people with Down syndrome.”

“DeOndra loved to help people and to advocate for people less fortunate,” says Mr. George Dixon, DeOndra’s father. “I remember DeOndra keynoting alongside Congresswoman Cathy McMorris Rodgers and Congressman Patrick Kennedy, and she was cracking everybody up with her jokes. Anyone who has met DeOndra knows she was a pistol – articulate, funny, smart and the most loving person I have ever known. We are so happy that this important bill is named after our little angel. People with Down syndrome deserve better, and this bill is a big step in the right direction.                                                   

Having advocated for the establishment of INCLUDE, GLOBAL continues to advocate for additional funding and programs that would help some of the most vulnerable populations within the Down syndrome community: including those living in rural America, Black or African Americans with Down syndrome and other minorities. There is some research that points to a significant disparity in lifespan for black or African Americans with Down syndrome as compared to a Caucasian with Down syndrome.

The INCLUDE Project was established via congressional directive in 2018 after a seminal first-in-kind House Appropriations Labor, Health and Human Services, and Education Subcommittee hearing led by then-Chairman Cole Tom Cole and Ranking Member Rosa DeLauro. Congresswoman McMorris Rodgers was a key supporter at the hearing and testified along with Crnic Institute for Down Syndrome Executive Director, Dr. Joaquín Espinosa, and GLOBAL Board Member and self-advocate, Frank Stephens. Frank’s testimony that day which included the famous phrase “I am a man with Down syndrome and my life’s worth living,” went viral to 1 million views that day and today stands at well over 200 million.

Dr. Espinosa’s testimony focused on the fact that people with Down syndrome have a very different disease profile whereby they are highly predisposed to certain disease (for example Alzheimer’s and certain autoimmune diseases) and highly protected from others (for example solid tumors). He also presented his groundbreaking study that allows us to categorize Down syndrome as an immune system disorder and how by studying people with Down syndrome we can not only improve their lives but the lives of millions of others who suffer from diseases.

Before Congress directed NIH to create the INCLUDE Project, Down syndrome was one of the least funded genetic conditions by the NIH despite being the leading cause of developmental delay in the U.S. and around the world. For nearly two decades the funding had languished between $16 million and $20 million even during years when there was a double-digit growth of the NIH budget. In 2023 the estimated INCLUDE budget is $144 million. GLOBAL’s advocacy goal is to increase funding to over $250 million a year.

GLOBAL Affiliate, the Crnic Institute for Down Syndrome, has five clinical trials specifically for patients with Down syndrome: Two in Alzheimer’s and Down Syndrome, one in Down Syndrome Regression Disorder, and two in autoimmunity and inflammation.

To read about the impactful research that the INCLUDE Project has funded visit the NIH Down Syndrome Coordinating Center Website at: https://includedcc.org/.

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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 WorldTM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual 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). 

Denver, CO, Jan 25, 2024 (GLOBE NEWSWIRE) — The Denver Business Journal (DBJ) 40 Under 40 Awards program announced last week that Michelle Sie Whitten, the Co-Founder, President & CEO of Global Down Syndrome Foundation (GLOBAL), will be inducted into the DBJ 40 Under 40 Hall of Fame on Thursday, March 7, 2024 at the Infinity Park Event Center, 4400 E. Kentucky Ave, Glendale, CO 80246.

Whitten will be joining 40 accomplished young professionals who will receive this prestigious annual recognition award the night of the event. She will be presented with the inaugural Hall of Fame honor and provide remarks reflecting on the time since her own DBJ 40 Under 40 award in 1999. Whitten was also a recipient of DBJ’s Most Admired CEO Award in 2019 and has been covered extensively by the prestigious publication, for her tireless work during the pandemicher relentless advocacy for increased Down syndrome research funding by the US government, and her life as a mother and businesswoman.

From 1993 to 2004 Whitten worked in the TV industry for cable pioneers Peter Barton, her father, John J. Sie and others. She attributes her own cable TV trailblazing success in China and East Asia to the unexpected opportunity to marry her academic degrees in international relations to her experience growing up in the industry.

In 2003 Whitten gave birth to her first child, Sophia, who happens to have Down syndrome. From that moment, Whitten has dedicated her life to improving the lives of people with Down syndrome through research, medical care, and government advocacy. With the support of her parents, John J. Sie and the late Anna Sie, Whitten established the Global Down Syndrome Foundation (GLOBAL) and GLOBAL’s Affiliates – the Linda Crnic Institute for Down Syndrome, the University of Colorado Alzheimer’s & Cognition Center, and the Anna & John J. Sie Center for Down Syndrome, all on the Anschutz Medical Campus. She has also helped to establish the adult Down syndrome clinic at Denver Health and most recently, the GLOBAL Inclusive Program at Regis University – first post-secondary program for people with intellectual disabilities at a Jesuit university.

The Whitten Family- Photo by Friends & Lovers Photography

“I’m so humbled to receive this lifetime honor,” says Whitten. “I do think these awards that we receive when we’re younger provide a bit of fuel for continued hard work and momentum. Everyone at GLOBAL and our Affiliates has contributed to this recognition and I am so grateful to have a world-class team. The honor is especially meaningful this year, so soon after my mom’s passing, it is definitely part of her legacy.”

“Michelle is one of the most hardworking, brilliant strategists that I have met,” says Dr. Joaquín Espinosa, Executive Director of the Linda Crnic Institute for Down Syndrome. “In the face of multiple challenges and two decades of defunding, her advocacy leadership has resulted in over $250 million in just six years for Down syndrome research at the National Institutes of Health. She could be doing most anything given her background but she has chosen to dedicate her life to her daughter Sophia and to elongating life and improving health outcomes for all people with Down syndrome. It is an honor to work with Michelle, to be able to lead a team of amazing scientists, and to work on life-changing research benefitting people with Down syndrome every day.” 

“Michelle is a role model for many as she focuses  her business acumen and strategic planning skills on her passion project, the growth and impact of the Global Down Syndrome Foundation, says Laura Barton, a cable TV pioneer and impact philanthropist. “It’s a privilege to be her longtime friend and supporter, watching her develop new programs, fund breakthrough  research  and bring national attention and funding to benefit the Down syndrome community.” 

Frank Stephens, a GLOBAL board member and self-advocate agrees, “In a world that seems content, maybe even eager, to find and curse the darkness, Michelle chooses to light a candle. Unexamined darkness surrounded Down syndrome for over a hundred years before Michelle chose to light a candle.  Michelle’s candle not only shed light on the medical characteristics of Down syndrome, but for millions of people like me around the world it also lit a path out of the shadows into healthy, happy, hopeful lives.  We owe her a debt we can only repay by becoming candles of hope and happiness for the world. I’m proud to be one of Michelle’s candles.”

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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 WorldTM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual 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

Denver, CO, Jan 18, 2024 (GLOBE NEWSWIRE) — Today, the Global Down Syndrome Foundation (GLOBAL) announced that Dr. Joaquín Espinosa, leader of its Affiliate, the Linda Crnic Institute for Down Syndrome (Crnic Institute) at the University of Colorado Anschutz Medical Campus, was awarded an Anschutz Acceleration Initiative (AAI) grant that will fund a pioneering clinical trial aimed at normalizing the immune system and decreasing inflammation in children with Down syndrome.

The award will fund the clinical trial proposal, “Immunomodulatory Therapy in Down Syndrome,” led by Espinosa and his team at the Crnic Institute, building on their groundbreaking discovery in 2016 that interferon signaling does not shut down in people with Down syndrome as it should, and the health consequences of that are multifold. That discovery was made possible through the establishment of the biorepository and database called the Crnic Institute Human Trisome ProjectTM that was funded in 2013 by the University of Colorado School of Medicine (CU SOM) on the Anschutz Medical Campus (CU Anschutz), the Anna & John J. Sie Foundation, and the Global Down Syndrome Foundation (GLOBAL).

“Receiving this grant is deeply gratifying,” says Dr. Joaquín Espinosa, Professor in Pharmacology and Executive Director of the Crnic Institute. “Everyone at the Crnic Institute, GLOBAL and all our Affiliates have worked so hard in the last ten years to take our remarkable findings from the Petri dish and parlay that into benefit for people with Down syndrome. This generous funding for a clinical trial grant from The Anschutz Foundation, CU Anschutz and the CU SOM could very well lead to a new age of therapeutic development to improve the quality of life and extend lifespan for millions of individuals with Down syndrome.”“This project is an outstanding example of the leadership role academic medical centers provide in supporting fundamental research, developing discoveries into treatments, and moving treatments into clinical care,” said John J. Reilly, Jr., MD, Dean of the University of Colorado School of Medicine. “I am hopeful that this trial will provide a new therapy for individuals with Down syndrome that will improve their quality of life.”

 

Joaquín Espinosa, Executive Director, Linda Crnic Institute for Down Syndrome & GLOBAL Self-Advocates

Photo Courtesy of the Global Down Syndrome Foundation

“GLOBAL looks forward to helping Dr. Espinosa and his team raise additional funds for this transformative clinical trial grant and to providing outreach to our families,” says Michelle Sie Whitten, president & CEO of GLOBAL. “It truly does take a village and we simply could not do this without our amazing self-advocates, families, scientists, philanthropists like the Anschutz family, and of course our Congressional and NIH Champions.” 

Down syndrome is a genetic condition where someone is born with three copies of chromosome 21 instead of two. It is often referred to as trisomy 21 (T21) and it is the most common chromosomal abnormality and a leading cause of intellectual and developmental disability worldwide.

The clinical trial funded by the AAI award will pave the way for the first immunomodulatory therapy for children with Down syndrome using a class of medicines known as JAK inhibitors. Key outstanding questions specific to individuals with Down syndrome will be addressed:

  • What are the impacts of interferon hyperactivity during early childhood?
  • How early during childhood could JAK inhibition be safely administered for therapeutic benefit?
  • What are the long-term effects of JAK inhibition?

While a year of testing safety for the drugs in children participants is the first step, assuming positive results, this could launch a new age of therapeutic development to improve the quality of life and extend the lifespan of millions of individuals affected by T21. These efforts also position the University of Colorado Anschutz Medical Campus at the forefront of a burgeoning field of therapeutic development for complex genetic pediatric conditions.

The AAI was created with a $50 million gift from The Anschutz Foundation to rapidly advance medical treatments and health innovations to make a transformational impact on patient care. Established at the CU SOM, CU Anschutz Chancellor Don Elliman and Dean of the CU SOM John J. Reilly, Jr., MD, announced the grantees late last week. From over 165 letters of intent and ultimately 56 full proposals, 9 research projects were funded.

Dr. Espinosa is the Primary Investigator for the grant, and he has brought together a stellar team of professionals who have been participating in the Crnic Institute Down Syndrome Grand Challenge Grants and the Down Syndrome Super Group for years. They include: Robert C. Fuhlbrigge, MD, PhD, Professor, Pediatric Rheumatology; Jessica Bloom, MD, MSCS, Assistant Professor, Pediatric Rheumatology; Gabriel Tarshish, MD, Assistant Professor, Pediatric Rheumatology; Deborah Fidler, PhD, Professor, Human Development and Family Studies, Colorado State University; Lina Ramesh Patel, PsyD, Associate Professor, Psychiatry; Ryan Kammeyer, MD, MSE, Assistant Professor, Pediatrics and Neurology; Angela Rachubinski, PhD, Assistant Research Professor, Developmental Pediatrics; Kelly Sullivan, PhD, Assistant Professor, Pediatrics; Matthew Galbraith, PhD, Assistant Research Professor, Pharmacology.

The eight other AAI grants were awarded to:

  1. Implementation of Personalized Skin Cancer Screening: Using Genetic & Clinical Risk Factors to Identify a High-Risk Subgroup
  2. Making Personalization the Standard Through Rapid Design, Implementation, Testing and Maintenance
  3. Multimaterial 3D Print Processing of Antimicrobial and Antifungal Dental Prosthetics
  4. MyD88 Platform for Enhancing Cellular Cancer Immunotherapy
  5. Oculomics as a Biomarker for Comprehensive and Non-Invasive Patient Health Assessment
  6. Retinal Transplant to Restore Vision in Patients with Macular Degeneration
  7. Targeting Protein Translation Elongation to Treat Cancer Patients
  8. Transforming Gastrointestinal Cancer Care from Inpatient Surgery to Outpatient Endoscopy by Enabling Third Space Endoscopy

 

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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 WorldTM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual 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

Sleep Apnea, Eye/Vision Care, Solid Tumors, Leukemia, and Physical Therapy Additions are Planned for Second Edition in 2027

DENVER –November 30, 2023

Today, Global Down Syndrome Foundation announced the roster of authors for the second edition of the first evidence-based GLOBAL Medical Care Guidelines for Adults with Down Syndrome (“GLOBAL Adult Guideline”). The first edition was published in JAMA, the Journal of American Medical Association, in October 2020, and is comprised of free checklists/toolkits, a family-friendly version, and translations into Spanish and Japanese. The fifteen authors include Down syndrome experts and the directors of the largest adult Down syndrome clinics in the U.S. Global Down Syndrome Foundation (“GLOBAL”) has also recruited an additional twenty volunteer committee members representing additional Down syndrome medical expertise.

The GLOBAL Adult Guideline Second Edition will provide new and important clinician guidance in the areas of sleep apnea, eye/vision care, solid tumors, leukemia, and physical therapy and fitness. The nine medical topics covered in the first edition will also be updated: behavior, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease, and celiac disease. GLOBAL, along with an impressive International Advisory Committee, is working to ensure that a family-friendly version, checklists/toolkits, and multiple language versions will be published shortly thereafter.

Atlantoaxial Instability spread

“We are so pleased to be able to expand this important resource for our adults with Down syndrome,” says Bryn Gelaro, Senior Director of Research & Medical Care at GLOBAL. “The work can be very difficult given the lack of historical research but creating a 5-6 year cycle where we can dependably update new editions of this guideline is so rewarding. It is also an honor to be working with our brilliant authors and medical committee members.”

The Authors in Alphabetical Order:

  1. Peter Bulova, MD – Professor of Medicine; Medical Director, University of Pittsburgh Adult Down Syndrome Center; Co-Director, Magee Center for Women with Disabilities, University of Pittsburgh Department of Medicine, Pittsburg, PA
  2. George Capone, MD – Associate Professor of Pediatrics; Director, Down Syndrome Clinic and Research Center, Medical Director, Pediatric Feeding Disorders Program, Kennedy Krieger Institute, Baltimore, MD
  3. Brian Chicoine, MD – Medical Director and Co-Founder, Advocate Medical Group Adult Down Syndrome Center, Park Ridge, IL
  4. Joaquín Espinosa, PhD – Executive Director, Linda Crnic Institute for Down Syndrome, University of Colorado Anschutz Medical Campus, Aurora, CO
  5. Terry Harville, MD, PhD, D(ABMLI), D(ABHI) – Professor of Internal Medicine, in the Division of Hematology/Oncology; Medical Director, HLA and Histocompatibility Laboratory; Medical Director, Immunogenetics and Transplantation Laboratory, University of Arkansas for Medical Sciences, Little Rock, AR
  6. Christine Heubi, MD – Surgical Director, Complex Obstructive Sleep Apnea Center; Assistant Professor, UC Department of Otolaryngology, Head and Neck Surgery, University of Cincinnati, Cincinnati, OH
  7. Vishal Jhanji, MD – Professor of Ophthalmology at the University of Pittsburgh School of Medicine, University of Pittsburg Department of Ophthalmology Pittsburgh, PA
  8. Barry Martin, MD – Associate Professor of General Internal Medicine, University of Colorado School of Medicine; Medical Director, Adult Down Syndrome Clinic at Denver Health, Denver, CO
  9. Emily McCourt, MD – Chief of Pediatric Ophthalmology; Vice Chair of Pediatric Ophthalmology; The Ponzio Family Chair for Pediatric Ophthalmology, Children’s Hospital Colorado, Aurora, CO
  10. Lina Patel, PsyD – Associate Professor, Department of Psychiatry; Director of the Down Syndrome Behavioral Health Collaborative, University of Colorado School of Medicine, Anschutz Medical Campus, Aurora, CO
  11. Moya Peterson, PhD, ARNP – Clinical Professor, School of Nursing; Co-founder and Medical Director, Adults with Down Syndrome Specialty Clinic, University of Kansas Medical Center,
  12. Michael Puente Jr, MD – Assistant Professor, Ophthalmology, School of Medicine, University of Colorado Anschutz Medical Campus; Director of Medical Student Education, Aurora, CO
  13. Mike Rafii, MD, PhD – Professor of Clinical Neurology; Medical Director of the Alzheimer’s Therapeutic Research Institute; Alzheimer’s Clinical Trials Consortium – Down Syndrome Principal Investigator, Keck School of Medicine of University of Southern California, Los Angeles, CA
  14. Carl Tyler, MD – Professor of Family and Community Medicine at Cleveland Clinic Lerner College of Medicine, Case Western Reserve University School of Medicine; Executive Board, American Academy of Developmental Medicine and Dentistry, Cleveland, OH
  15. Anna Marie White, MD, FACP, FAAP – Clinical Assistant Professor of Medicine and Pediatrics; Medical Director, Street Medicine Pitt, University of Pittsburgh Medical Center, Pittsburgh, PA

GLOBAL has worked with Congress and the National Institutes of Health (NIH) since 2006 advocating for a trans-NIH Down syndrome research funding program and for increased funding. In December of 2010, GLOBAL and the NIH co-organized the first Down syndrome research conference with a focus on registries and biobanks. One important result was the establishment of DS-Connect®: The Down Syndrome Registry at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).

GLOBAL has published both an 80-page guideline for medical professionals and a family-friendly version in Spanish in collaboration with El Centro de la Universidad Católica de Síndrome de Down in Chile and in Japanese in collaboration with the Japan Down Syndrome Association.

To learn more about the GLOBAL Adult Guideline and download your copy today, visit www.globaldownsyndrome.org/medical-care-guidelines-for-adults/

To learn more about Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

 

# # #

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 2,400 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).

IMPORTANT NOTICE

While content of this press release and the GLOBAL Guideline was developed by GLOBAL and the GLOBAL Guideline Authors, we are unable and do not intend to provide medical advice or legal advice to individuals. Please contact your health care provider(s) or legal advisor(s) for questions specific to your individual health history or care.

Press Contact

Anca Call: acall@globaldownsyndrome.org, 720-320-3832

 

 

Largest Down syndrome fundraiser in the world attracts over 1,400 guests from 16 states and 12 countries, raising funds for life-saving and transformative research and medical care

 

DENVER –November 21, 2023

On Saturday, November 18, Global Down Syndrome Foundation (GLOBAL) raised $2.5 million at their Be Beautiful Be Yourself Fashion Show, held at the Sheraton Denver Downtown Hotel. Now in its 15th year, GLOBAL’s marquee event is the largest fundraiser for Down syndrome in the world, raising a cumulative $28 million since its inception.

The star-studded evening was dedicated to beloved GLOBAL Co-Founder, Anna Sie, who sadly passed away on September 20 after a long and valiant battle with cancer. Anna, a devoted wife, mother, grandmother, sister, aunt, loyal friend, and mentor is remembered as a generous philanthropist who co-founded GLOBAL, the Crnic Institute, the Sie Center for Down Syndrome, the Alzheimer’s & Cognition Center, the GLOBAL Inclusive Program and so much more. Anna made it her life’s mission to ensure her granddaughter, Sophia, and all people with Down syndrome have a brighter future.

“Tonight, as we gather to celebrate the brilliance and beauty of individuals with Down syndrome, we hold my mother, Anna Sie, in our hearts,” said Michelle Sie Whitten, President and CEO. “Her legacy is reflected in every smile on the runway, in every breakthrough in our research, and in the ongoing commitment of GLOBAL to ensure that every individual with Down syndrome is valued and included in society. We are overwhelmed by the continued support that helps us advance our mission, and we vow to continue my mother’s work with the same vigor and love she exemplified.”

To kick off the night, red carpet appearances were made by acclaimed actor and author Rob Lowe; Academy Award-nominated and award-winning actress Laura Linney; award-winning actor John C. McGinley; beloved actress from the longest primetime TV drama on ABC, Grey’s AnatomyCaterina Scorsone, and her costars Kevin McKidd, Anthony Hill, Alexis Floyd and Jake Borelli;  actress and singer Danielle Savre; NFL Hall of Famer Terrell Davis; model, actress, and entrepreneur Beverly Johnson; actors Max Carver, Kevin Iannucci, Matthew Von der Ahe, and James Day Keith; and model and actress Amanda Booth. Award-winning local NBC anchors Kim Christiansen and Mark Koebrich emceed the event.

Later in the evening, 2023 GLOBAL Ambassador Grace Brennan, Denver Broncos cheerleaders Ariana and Emily, and 2023 Miss CO Volunteer Karlynn Trujillo joined the line-up and rocked the runway, which featured 21 brilliant and beautiful models who happen to have Down syndrome.

The Ambassador and celebrities joined GLOBAL in honoring the 2023 Quincy Jones Exceptional Advocacy Awardees Madison Tevlin and Bobby Farrelly. Farrelly, an internationally recognized director known for Dumb & Dumber, There’s Something About Mary, Hall Pass and more, is a longtime advocate for people who are differently-abled. Earlier this year, Farrelly released the hit movie Champions, a heartfelt comedy that centers around a basketball coach who helms a team of players with intellectual disabilities. The movie stars Woody Harrelson, Kaitlin Olsen, and Madison Tevlin, a multi-talented model, actor, and self-advocate who has Down syndrome.

Upon receiving her award following an impassioned introduction by Champions co-star Woody Harrelson, Tevlin said: “Being seen as a role model is not something I ever dreamed of, and that’s because I’m just me being me. I encourage everyone to do the same. Thank you so much to GLOBAL for this honor. I will forever cherish this award.”

“This is without question the greatest honor of my life,” said Farrelly in his acceptance speech. “I am profoundly humbled and extremely grateful to be recognized by the Down syndrome community.” Farrelly continued, “I’ve worked with some incredible leading ladies in my day, but I’ve never worked with any actress who lights up the screen quite like Madison Tevlin. She’s beautiful and strong and proud to be who she is. And, as Woody found out, she has a way of stealing every scene she’s in.”

Powerhouse philanthropists Luisa Law and Amanda Precourt proudly served as this year’s Co-Chairs. Past event chairs include Amanda Booth, Lou III and Jill Rotella, Tom and Michelle Whitten, Kacey Bingham and Brittany BowlenPeter KudlaMaureen Regan CannonAnna and John J. SieSharon Magness Blake and Ernie BlakeRicki Rest, and Nancy Sevo.

Laura Linney rocks the runway with models Lou Rotella and Ari Hochman

Auctioneer Grant Snyder led GLOBAL’s most successful cash call in honor of Anna Sie and sold once-in-a-lifetime packages including a Bobby Farrelly red carpet film premiere invite; a golf foursome with NFL Hall of Famer Terrell Davis; a private dinner with Denver Broncos’ Alex Singleton and two other players; a beautiful painting donated by world-renowned artist William Matthews; a beautiful Hyde Park Jewelers diamond and topaz necklace and earrings modeled by Amanda Booth, and the Selkie dress she was wearing; a luxury Sicily holiday including multiple catered dinners donated by Riccardo Mazzeo and Three Tomatoes Catering; a private plane and Austin FC experience donated by Amanda PrecourtAnthony Precourt/Austin FC; dinner with Denver Nuggets legend Bill Hanzlik at renowned Matsuhisa restaurant donated by Jay Mills; a private sushi and sake dinner at developer and designer Amanda Precourt’s new mixed-use art gallery and home, The Cookie Factory.

Proceeds from GLOBAL’s Be Beautiful Be Yourself Fashion Show help underwrite life-changing and life-saving research and medical care at GLOBAL’s affiliates – the Crnic Institute for Down Syndrome, Alzheimer’s & Cognition Center, and the Sie Center for Down Syndrome at Children’s Hospital Colorado all at the Anschutz Medical Campus. The fashion show would not be possible without the generosity of GLOBAL’s Leadership CirclesponsorsAmbassadorsQ-Awardeesmodels, Down syndrome partner organizations, celebrities, self-advocates and families.

To learn more about the Be Beautiful Be Yourself Fashion Show, view photos, or to donate, visit bebeautifulbeyourself.org.

To learn more about the Global Down Syndrome Foundation, visit www.globaldownsyndrome.org.

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 2,400 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 110 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 SyndromePrenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World™. 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).

PRESS CONTACTS:
Emily Johnston, emily@ej-pr.com, C: (818) 861-5665
Anca Elena Call, acall@globaldownsyndrome.org, C: (720) 320-3832