Latest news with #GlobalDownSyndromeFoundation
Yahoo
5 days ago
- General
- Yahoo
Global Down Syndrome Foundation & Down Syndrome Diagnosis Network Sign Multi-Year Collaboration Agreement
Global Down Syndrome Foundation Global Down Syndrome Foundation Denver, Stillwater, Minn, June 03, 2025 (GLOBE NEWSWIRE) -- Today, Global Down Syndrome Foundation (GLOBAL) and Down Syndrome Diagnosis Network (DSDN) are proud to announce a multi-year collaboration agreement to educate moms of children with Down syndrome – particularly those in the early years – about important medical care resources and research opportunities. The agreement builds on GLOBAL and DSDN's past five year collaboration and ensures hundreds of DSDN Rockin' Mom® Retreat attendees can continue to participate in the GLOBAL Research & Medical Care Roundtable (GLOBAL Roundtable) as a free benefit. It also provides new collaboration and support for DSDN's core parent resources, including peer-to-peer support groups and online communities hosted in the DSDN App, where families connect by birth year, co-occurring conditions, and shared identities. The GLOBAL Roundtable has educated over 900 moms of infants and young children on cutting-edge scientific breakthroughs, clinical trials, medical best practices and more. Surveys associated with the GLOBAL Roundtable consistently average 4.8 out of 5, highlighting its impact. Anyone who has registered for the DSDN Rockin' Mom® Retreat can register for the GLOBAL Roundtable for free. This year's DSDN Rockin' Mom® Retreat will be held in Pine Mountain, Georgia from September 19-20. The GLOBAL Roundtable includes welcome remarks from DSDN Executive Director, Melissa Shutwell, GLOBAL President & CEO, Michelle Sie Whitten, and GLOBAL Vice President for Research and Medical Care, Bryn Gelaro. Below is the 2025 GLOBAL Roundtable panel of renowned Down syndrome experts: Joaquín Espinosa, PhD, Executive Director, Linda Crnic Institute for Down Syndrome (Crnic Institute) – Dr. Espinosa will discuss the latest research topics (including the first pediatric immune system dysregulation Jak Inhibitor clinical trial) from the Linda Crnic Institute for Down Syndrome. Nicole Baumer, MD, MEd, Director, Anna and John J. Sie Center for Down Syndrome at Children's Hospital Colorado – Dr. Baumer will provide an overview of neurodevelopmental conditions (including Autism, ADHD) in early childhood and ways to support. Emily McCourt, MD, Chief of Pediatric Ophthalmology, University of Colorado Anschutz Medical Campus – Dr. McCourt will discuss the eye care needs for children with Down syndrome during their first few years of age (including keratoconus, strabismus, and glaucoma). Sujata Bardhan, MS, PhD, Program Director in the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH) – Dr. Bardhan will discuss The NIH INCLUDE Project: Accelerating Research Discoveries for People with Down Syndrome Across the Lifespan (including potential for families to get involved and participate). 'DSDN has supported more than 25,000 parents through our online peer-to-peer support groups over the past 10 years and has welcomed over 3,000 moms to our annual Rockin' Mom Retreats,' says DSDN Executive Director and mom to a 9-year-old with Down syndrome, Melissa Shutwell. 'The Rockin' Mom Retreat is a chance to connect, recharge, and be inspired—and thanks to GLOBAL's support, it's also a space where attendees can stay informed about the latest research and medical care for their children. The GLOBAL Roundtable is a favorite among many of our moms, and we're grateful to continue this collaboration to keep such a valuable resource at the heart of our retreat for years to come.' 'We have supported DSDN from its very early years, and we are amazed and impressed at how fast the organization has grown,' says Michelle Sie Whitten, GLOBAL President & CEO, and parent of a young adult with Down syndrome. 'The information and network they provide for moms and families is so important and we are proud to be a part of that. Any mom who hasn't attended a Rockin' Mom Retreat should absolutely check it out!' 'Every year it is exciting to work with Melissa and her team and bring together world-renowned Down syndrome experts to speak at the DSDN Rockin' Mom Retreat GLOBAL Roundtable,' says Bryn Gelaro, GLOBAL Vice President of Research & Medical Care. 'While the complimentary mimosa or sangria makes things fun, these moms are super smart and contribute so much to the conversation. I'm convinced this not only helps their own children but their local communities as well.' To learn more about the DSDN Rockin' Mom® Retreat, visit ### About the DSDN The Down Syndrome Diagnosis Network (DSDN) is the leading organization dedicated to supporting families who receive a Down syndrome diagnosis for their child. Since 2014, DSDN has supported more than 25,000 families through peer-to-peer support, medical condition-specific groups, educational resources, and community-building experiences. DSDN creates safe, inclusive spaces for parents to share their experiences, access real-time support, and build lifelong relationships that strengthen their ability to care for both their children and themselves. In addition to its robust parent network, DSDN is a national leader in improving the Down syndrome diagnosis experience. The organization partners with healthcare professionals to provide training, resources, and direct feedback from families to ensure that diagnoses are delivered with empathy, accuracy, and immediate access to support. Through this work, DSDN is helping raise the standard for how Down syndrome diagnoses are shared and received. DSDN is best known for its vibrant online support groups and its annual Rockin' Mom® and Rockin' Dad™ Retreats, which have welcomed thousands of parents for weekends of connection, rest, and inspiration. Learn more at and follow DSDN on Facebook, Instagram, LinkedIn, and TikTok. 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 established the first Down syndrome research institute and supports over 400 scientists and over 2,500 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, the University of Colorado Alzheimer's and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health. 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 annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit and follow us on social media Facebook, X, Instagram, and LinkedIn. Attachments Global Down Syndrome Foundation Global Down Syndrome Foundation CONTACT: Anca E. Call Global Down Syndrome Foundation (720) 320-3832 acall@ Bryn Gelaro Global Down Syndrome Foundation (410) 522-8035 bgelaro@ while retrieving data Sign in to access your portfolio Error while retrieving data Error while retrieving data Error while retrieving data Error while retrieving data
Yahoo
23-05-2025
- Entertainment
- Yahoo
GLOBAL Raises $450,000 at their AcceptAbility Gala as Celebrities & Congress Step Out for People with Down Syndrome
Global Down Syndrome Foundation Honored Reps. Aderholt and DeGette at Event that Featured Multiplatinum Artist & Actor Phillip Phillips and Inclusive Dance Team Global Down Syndrome Foundation - AcceptAbility Gala Global Down Syndrome Foundation - AcceptAbility Gala Denver, May 23, 2025 (GLOBE NEWSWIRE) -- On Wednesday, the Global Down Syndrome Foundation (GLOBAL) held its seventh annual AcceptAbility Gala, Washington DC's largest fundraiser for people with Down syndrome, raising $450,000 to support important research and medical care benefiting people with Down syndrome. Representatives Robert Aderholt (R-AL) and Diana DeGette (D-CO) received GLOBAL's highest honor, the Quincy Jones Exceptional Advocacy Award, and pledged their continued strong advocacy in Congress to improve the lives of people with Down syndrome. 'At GLOBAL, we work 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 bipartisan support from Congress, NIH leadership, self-advocates, families and corporate leaders, all celebrating the impact of GLOBAL's work and a brighter future for people with Down syndrome. The joy and excitement at our event, and the tangible outcome of our work together, is truly rewarding!' 'People with Down syndrome are a beautiful reminder that we are all fearfully and wonderfully made in God's image,' says Congressman Robert Aderholt. 'I am honored to receive the Quincy Jones Exceptional Advocacy Award from GLOBAL and to support their important mission to extend life and improve health outcomes for individuals with Down syndrome. Last night's AcceptAbility Gala was truly inspiring. It was a joy to be surrounded by so many incredible self-advocates, their families, dedicated professionals, and fellow Members of Congress. The evening underscored how vital continued investment in Down syndrome research is—not just for improving health—but for affirming the dignity and God-given worth of every life. It sends a powerful message to the world that individuals who are differently-abled have unique value and purpose.' 'It is an honor to be recognized by the Global Down Syndrome Foundation with the Quincy Jones Exceptional Advocacy Award,' says Congresswoman Diane DeGette. 'Last night's AcceptAbility Gala was truly a celebration of people with Down syndrome and what biomedical research at the NIH is doing to improve their lives. I am proud to have reintroduced the bipartisan DeOndra Dixon INCLUDE Project Act earlier this week which will ensure NIH continues to pursue innovative and groundbreaking research that includes people with Down syndrome. It is amazing what GLOBAL and my dear friends John Sie and Michelle Sie Whitten have built at the Crnic Institute and the Sie Center for Down Syndrome in Colorado. Together, we are creating a brighter future for children and adults with Down syndrome.' Celebrities passionate about the cause included Multiplatinum Artist & Actor, Phillip Phillips; actor, author and public speaker Frank Stephens; author and public speaker David Egan; six-time Emmy® Award-winner Chuck Todd, and three-time Emmy® Award-winner Autria Godfrey who emceed the gala. The evening was dedicated to long-time GLOBAL supporter and Frank Stephens' mother, Cornelia 'Corny' Stephens. Corny passed away after a long and courageous fight with Alzheimer's disease. A video tribute also honored music icon Quincy Jones who passed away last November. Held at the Marriott Marquis in Washington, DC, the event was attended by GLOBAL awardee alums,Representative Richard Hudson (R-NC) who presented the Quincy Jones Exceptional Advocacy Award to Representative Robert Aderholt, Senator John Hickenlooper (D-CO) who presented the award to Representative Diana DeGette, Representative Rosa DeLauro (D-CT) who presented her scholarship award, and Pete Stauber (R-MN). Representatives DeGette and Hudson, and Senator Hickenlooper, thrilled the audience when they announced the House and Senate reintroduction of the game-changing bill, the DeOndra Dixon INCLUDE Project Act. The bill will ensure that the trans-NIH Down syndrome funding program called the INCLUDE Project will continue to exist and grow. The bill is a legacy for the memory of GLOBAL Ambassador DeOndra Dixon who is Academy and Grammy Award-winning Jamie Foxx's younger sister. Jamie Foxx is one of GLOBAL's international spokespeople. It is also a testament to the dedication of the now-retired Representative Cathy McMorris Rodgers (R-WA). To recognize the transformative leadership of two key Congressional Champions, the Rosa DeLauro GLOBAL Advancement Award with a post-secondary scholarship was provided to Leo Weeks from Herndon, Virginia and the Tom Cole GLOBAL Advancement Award was provided to Gabby Parillon from Lewes, Delaware. Representative Rosa DeLauro was on-hand to personally present the Advancement Award, leaving the audience inspired to do even more for people with Down syndrome and their families. With the help of GLOBAL Ambassador Tucker Emry and his family, Erin Book Mullen, co-chairs Natalie Farr Harrison and her husband Guy Harrison, and our amazing Sponsors, the inspirational gala attracted 400 attendees and raised $450,000 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. At the end of the evening, Phillip Phillips wowed the audience not only with his 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 his biggest hits including Gone, Gone, Gone and Home, and solo dancer Robert Wallop and inclusive dance team RhythmXpress delighted attendees with dance performances set to Papa's Got a Brand New Bag and a Hairspray medley. Additional notables in attendance included GLOBAL Chairman John J. Sie, GLOBAL Ambassadors Sophia Whitten, Charlotte (Charley) Fonfara-LaRose, and Abby Ashbrook; Directors from the NIH Drs. Jay Bhattacharya, Richard Hodes, Gary Gibbons, Alison Cernich, Walter Koroshetz, Michael Chiang, Monica Webb Hooper, Anna Mazzucco and Annica Wayman; Jim Hudson and Heather Sachs from the National Down Syndrome Congress, and executives from Black Down Syndrome Association, Down Syndrome Guild of Dallas, Virginia Down Syndrome Association, 321 Foundation, Down Syndrome Association of Jacksonville, and Down Syndrome Association of Delaware. To learn more about GLOBAL, visit ### About the Global Down Syndrome FoundationThe 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 established the first Down syndrome research institute and supports over 400 scientists and over 2,700 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, the University of Colorado Alzheimer's and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health. 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 annual AcceptAbility Gala in Washington DC, andthe annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit and follow us on social media Facebook, X, Instagram, LinkedIn, and YouTube. Attachments Global Down Syndrome Foundation - AcceptAbility Gala Global Down Syndrome Foundation - AcceptAbility Gala CONTACT: Anca Call Global Down Syndrome Foundation (720) 320-3832 pr@ Shawn Flaherty Creative Strategies PR (703) 554-3609 Shawn_Flaherty@ in retrieving data Sign in to access your portfolio Error in retrieving data Error in retrieving data Error in retrieving data Error in retrieving data
Business Upturn
14-05-2025
- Health
- Business Upturn
United Coalition for Down Syndrome Condemns the Rise in the Use of the R-word
Denver, CO, May 13, 2025 (GLOBE NEWSWIRE) — CINCINNATI, DENVER, HOFFMAN ESTATES, Ill., WASHINGTON, D.C., WOBURN, Mass. – Today, the United Coalition for Down Syndrome is speaking out against the alarming resurgence of the 'R-word' in public discourse. At the same time, we are calling on individuals and organizations to take a stand, by pledging not to use this harmful slur. Numerous media outlets have reported a sharp increase in the word's usage across television, radio, podcasts, social media, and the internet. A recent study examining social media in January 2025 revealed a staggering 207.5% rise in posts containing the R-word on X alone – totaling 312,642 instances. Shockingly, there are some who believe its use is a 'great cultural victory.' We firmly reject that notion. The R-word is not a cultural triumph – it is a tool of marginalization. It dehumanizes people with Down syndrome and other disabilities and can contribute to mental distress and long-lasting harm. This type of language is rooted in the same prejudice that, for decades, led to people with Down syndrome and other intellectual and developmental disabilities being placed in cruel and inhumane institutions such as Willowbrook, NY – a practice that continued well into the early 1990s. 'Being compared to people like me should be considered a badge of honor. No one overcomes more than we do and still loves life so much. And yet here we are in 2025 with some of the most influential people in our country, like naughty little boys with their first curse word, reviving the use of the R-word just to gain attention and, meanwhile, opening the floodgates to its popular use. I appreciate the United Coalition for Down Syndrome standing up for what is right, and I hope this goes a long way in educating people that using the R-word is like a little dagger jabbing at our dignity as human beings,' says Frank Stephens, a Special Olympics Global Messenger associated with the 'End the Word' campaign, and Global Down Syndrome Foundation board member. The United Coalition for Down Syndrome embraces and is grateful for the freedom of speech that defines our nation. But using that freedom to perpetuate a derogatory term aimed at one of society's most vulnerable populations is not bold – it's cowardly. Not everyone with an intellectual and developmental disability can push back against such slurs or exact any meaningful social cost on those who use them. We believe that the overwhelming majority of Americans want to do the right thing. The United Coalition for Down Syndrome urges everyone to make the conscious choice to leave this word behind. In exercising our freedom of speech, let's also choose compassion, dignity, and respect. These are lives worth celebrating – and our language should reflect that truth. Related Resources : GiGi's Playhouse Down Syndrome Achievement Centers: Community Page; GiGi's Message on the R Word Global Down Syndrome Foundation: Words Can Hurt National Down Syndrome Congress: NDSC condemns the use of the 'R-word' and calls for respectful language National Down Syndrome Society: Preferred Language Guide; R-Word TikTok Video Special Olympics: Why the R-word is the R-Slur; Increase Usage of the R-word on Social Media About the United Coalition for Down Syndrome The United Coalition for Down Syndrome (UCDS) is a coalition of national Down syndrome organizations seeking to facilitate collective action and speak with a unified voice concerning critical issues that impact the Down syndrome community in the United States. UCDS is comprised of the following national organizations: GiGi's Playhouse Achievement Centers, Global Down Syndrome Foundation, LuMind IDSC, National Down Syndrome Congress, and National Down Syndrome Society. All of our organizations remain steadfastly non-partisan, focusing solely on the well-being of individuals with Down syndrome and their families. Disclaimer: The above press release comes to you under an arrangement with GlobeNewswire. Business Upturn takes no editorial responsibility for the same.
Yahoo
13-05-2025
- Politics
- Yahoo
United Coalition for Down Syndrome Condemns the Rise in the Use of the R-word
Freedom of Speech & Protecting Vulnerable Communities Are Not Mutually Exclusive Denver, CO, May 13, 2025 (GLOBE NEWSWIRE) -- CINCINNATI, DENVER, HOFFMAN ESTATES, Ill., WASHINGTON, D.C., WOBURN, Mass. – Today, the United Coalition for Down Syndrome is speaking out against the alarming resurgence of the 'R-word' in public discourse. At the same time, we are calling on individuals and organizations to take a stand, by pledging not to use this harmful slur. Numerous media outlets have reported a sharp increase in the word's usage across television, radio, podcasts, social media, and the internet. A recent study examining social media in January 2025 revealed a staggering 207.5% rise in posts containing the R-word on X alone – totaling 312,642 instances. Shockingly, there are some who believe its use is a 'great cultural victory.' We firmly reject that notion. The R-word is not a cultural triumph – it is a tool of marginalization. It dehumanizes people with Down syndrome and other disabilities and can contribute to mental distress and long-lasting harm. This type of language is rooted in the same prejudice that, for decades, led to people with Down syndrome and other intellectual and developmental disabilities being placed in cruel and inhumane institutions such as Willowbrook, NY – a practice that continued well into the early 1990s. 'Being compared to people like me should be considered a badge of honor. No one overcomes more than we do and still loves life so much. And yet here we are in 2025 with some of the most influential people in our country, like naughty little boys with their first curse word, reviving the use of the R-word just to gain attention and, meanwhile, opening the floodgates to its popular use. I appreciate the United Coalition for Down Syndrome standing up for what is right, and I hope this goes a long way in educating people that using the R-word is like a little dagger jabbing at our dignity as human beings,' says Frank Stephens, a Special Olympics Global Messenger associated with the 'End the Word' campaign, and Global Down Syndrome Foundation board member. The United Coalition for Down Syndrome embraces and is grateful for the freedom of speech that defines our nation. But using that freedom to perpetuate a derogatory term aimed at one of society's most vulnerable populations is not bold – it's cowardly. Not everyone with an intellectual and developmental disability can push back against such slurs or exact any meaningful social cost on those who use them. We believe that the overwhelming majority of Americans want to do the right thing. The United Coalition for Down Syndrome urges everyone to make the conscious choice to leave this word behind. In exercising our freedom of speech, let's also choose compassion, dignity, and respect. These are lives worth celebrating – and our language should reflect that truth. Related Resources: GiGi's Playhouse Down Syndrome Achievement Centers: Community Page; GiGi's Message on the R Word Global Down Syndrome Foundation: Words Can Hurt National Down Syndrome Congress: NDSC condemns the use of the 'R-word' and calls for respectful language National Down Syndrome Society: Preferred Language Guide; R-Word TikTok Video Special Olympics: Why the R-word is the R-Slur; Increase Usage of the R-word on Social Media About the United Coalition for Down SyndromeThe United Coalition for Down Syndrome (UCDS) is a coalition of national Down syndrome organizations seeking to facilitate collective action and speak with a unified voice concerning critical issues that impact the Down syndrome community in the United States. UCDS is comprised of the following national organizations: GiGi's Playhouse Achievement Centers, Global Down Syndrome Foundation, LuMind IDSC, National Down Syndrome Congress, and National Down Syndrome Society. All of our organizations remain steadfastly non-partisan, focusing solely on the well-being of individuals with Down syndrome and their families. CONTACT: Anca Call Global Down Syndrome Foundation (720) 320-3832 Jim Hudson National Down Syndrome Congress C: (513) 400-6563 jim@ Michelle Sagan National Down Syndrome Society C: (301) 728-0447 msagan@ Kris Meadows GiGi's Playhouse C: (815) 739-7656 Kmeadows@ Kate O'Neill LuMind IDSC C: (508) 344-4932 koneill@ in retrieving data Sign in to access your portfolio Error in retrieving data Error in retrieving data Error in retrieving data Error in retrieving data
