Archive for the ‘Press Releases’ Category

At the Global Down Syndrome Foundation (GLOBAL), we are saddened and horrified by yesterday’s devastating act of violence against the Ukrainian city of Vinnytsia. A missile strike hit the city center and took the lives of 23 innocent Ukrainians, including 4-year-old Liza Dmitrieva, who had Down syndrome. Liza, like so many others tragically lost in this war, had a long, full life ahead of her. Today, GLOBAL joins the world in mourning for Liza and everyone who was killed or injured in this most recent senseless attack. Our hearts go out to Liza’s mother, who was injured, and all those facing profound loss as result of this terrible war.  

The GLOBAL Grants will fund important research, medical outreach, and health programs to help over 3,500 professionals, families, and self-advocates

Denver July 5, 2022 – Today, Global Down Syndrome Foundation (GLOBAL) awarded over $76,000 in education grants to Down syndrome organizations across the United States and abroad. Since the founding of the GLOBAL Membership Program in 2012, more than $1 Million to 235 grants – education, employment and COVID – have been provided to GLOBAL Organization Members.

This year’s education grants will fund eleven programs in Albania, Arizona, California, Delaware, Missouri, Nebraska, North Carolina, Ohio, Texas, and Wisconsin. The programs will focus on providing adult medical care, mental health, research & medical outreach, health & wellness programs and more. More than 3,500 professionals, family members and self-advocates will directly benefit.

“We are so inspired by the amazing Down syndrome organizations we serve, and the impactful programs they provide for their communities,” said Michelle Sie Whitten, President & CEO of GLOBAL. “Our member organizations are on the front line providing their families life-changing programs and services every day. We are proud to contribute our part as a national partner.”

The 2022 GLOBAL Education Grant recipients and their funded programs are (in alphabetical order):

  1. Buddy Up for Life, Inc. (New Albany, OH): “Buddy Up Fitness” will facilitate eight high-intensity interval training sessions for people with Down syndrome four times a year.
  2. Coastal Bringing Up Down Syndrome (Wilmington, NC): “iCan Swim Camp (Brunswick County)” will collaborate with a local college to lead five-day swimming camps to increase balance, coordination, activity level, and overall fitness and safety in the water.
  3. Down Syndrome Albania Foundation (Tirana, Albania): “Reach for Health-Support for Adults with Down Syndrome” will support medical care for adults with Down syndrome and host three meetings to educate the community on the GLOBAL Adult Guideline.
  4. Down Syndrome Association for Families (Lincoln, NE): “High Intensity Functional Training (HIFT)” will facilitate a 50-week series of CrossFit sessions for 30 people with Down syndrome.
  5. Down Syndrome Association of Central Texas (Austin, TX): “DSACT Medical Outreach” will facilitate a multi-pronged medical outreach program in partnership with the UT Austin Dell Medical School to provide Down syndrome-specific trainings to medical professionals.
  6. Down Syndrome Association of Delaware (Middleton, DE): “Behavior Workshop with Dr. Lina Patel” will provide a behavior workshop offered to parents and caregivers in conjunction with Down Syndrome Interest Group of Pennsylvania.
  7. Down Syndrome Association of Greater St. Louis (Brentwood, MO): “Down Syndrome and Dementia: Outreach, Support, and Education” will provide Alzheimer’s and dementia support and education to the community over the course of six sessions.
  8. Down Syndrome Association of Northeast Ohio (Independence, OH): “DSANEO Community of Care Medical Outreach for All Ages and Stages” will provide four webinars to parents and six presentations for medical professionals and students on Down syndrome, research, and medical care resources.
  9. Down Syndrome Association of Wisconsin – Fox Cities (Appleton, WI): “DSAW-Fox Cities Health & Wellness Programs” will pilot two new programs, including a cooking class focused on health and safety and a fitness class focused on stretching, hydration, and proper technique.
  10. Down Syndrome Connection of the Bay Area (Danville, CA): “Mental Health & Wellness Alliance” will fund the expansion of an existing program dedicated to providing training and support for mental health professionals working with patients with Down syndrome and other intellectual and developmental disabilities.
  11. Sharing Down Syndrome Arizona (Gilbert, AZ): “The Sharing Down Syndrome Community Ambassador Program” facilitates a cycling and fine motor skill study at Arizona State University and a meeting between adults with Down syndrome and medical students and professionals at the Mayo Clinic.

“We are excited to highlight the importance of research as a benefit for people with Down syndrome in our community,” said Gina Johnson, Director & Founder of Sharing Down Syndrome Arizona. “We are grateful for GLOBAL’s Education Grant program, which is helping people with Down syndrome in Arizona and around the world.”

To learn more about the GLOBAL membership grants, visit https://www.globaldownsyndrome.org/global-grants/

To learn more about individual and organization GLOBAL memberships, visit https://www.globaldownsyndrome.org/global-membership/

To learn more about Global Down Syndrome Foundation, visit www.globaldownsyndrome.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 120 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 Testing and Information about Down Syndrome, 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).

Press Contacts           
Anca Call                                            
acall@globaldownsyndrome.org      
720-320-3832

This important new resource is available online and in print along with family-friendly toolkits that help adults with Down syndrome receive updated care from medical providers

Denver June 23, 2022 – Today, Global Down Syndrome Foundation (GLOBAL) announced the publication of a family-friendly version of the GLOBAL Medical Care Guidelines for Adults with Down Syndrome (GLOBAL Adult Guideline).  The resource is a professional rewrite aimed at accessibility, with focus group input from individuals with Down syndrome and their family members. Focus group contributors were selected to include gender, racial, and age diversity.

The GLOBAL Adult Guideline was published in JAMA, the Journal of American Medical Association, in October 2020 and was the culmination of five years of hard work led by GLOBAL and the medical directors of the largest adult Down syndrome clinics in the United States. Written for medical providers, it is a technical document that covers nine areas – behavior, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease, and celiac disease. 

“We created the guidelines following the highest standards so that we could be published in JAMA,” says Michelle Sie Whitten, President & CEO of GLOBAL. “Every English-reading practitioner can find and implement the guidelines, which is such a gift to our community. Today, we are taking it to the next level and empowering adults with Down syndrome and their families to understand the guidelines and to advocate for them with their medical providers.  As a parent of a 19-year-old with Down syndrome, it is dream come true.”

The Family-Friendly GLOBAL Adult Guideline has helpful pull-out quotes, large photos and font, and is color coded by medical topic. The written copy is approximately 20 pages, compared to the technical version, which is over 80 pages. The Family-Friendly GLOBAL Adult Guideline can be accessed free of charge on the GLOBAL website and in print form. It is anticipated that the print version will be ordered by medical centers, Down syndrome organizations, and other advocacy groups.

Other important resources for families include the GLOBAL Guideline Toolkits, which are also available online. GLOBAL is currently in the second year of its next five-year plan to update the GLOBAL Adult Guideline to include new medical areas including sleep apnea, blood cancers, solid tumor cancers, vision and eye issues, and physical therapy and fitness.

To learn more about the GLOBAL Guideline, visit www.globaldownsyndrome.org/medical-care-guidelines-for-adults/

To learn more about Global Down Syndrome Foundation, visit www.globaldownsyndrome.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 120 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 Testing and Information about Down Syndrome, 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 Contacts          

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

GLOBAL’s Be Beautiful Be Yourself Fashion Show Attracts Celebrities, Honors GLOBAL Ambassador Micah Quinones and Quincy Jones Exceptional Advocacy Awardees – Actor Eric Dane and Author & Self-Advocate David Egan

DENVER, June 21, 2022 –

Today, Global Down Syndrome Foundation (GLOBAL) announced celebrities Caterina Scorsone and John C. McGinley will attend its annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. In its 14th year, the award-winning event will be held in-person on Saturday, November 12, at the Sheraton Denver Downtown Hotel. Proceeds benefit GLOBAL’s life-saving and transformative research and medical care.

This year, the inspirational event will honor GLOBAL Ambassador Micah Quinones, a young model who happens to have the dual diagnosis of Down syndrome and autism. He is the son of supermodel, actress, and GLOBAL Spokesperson and 2022 Event Chair, Amanda Booth, and creative director and brand strategist Mike Quinones. At just eight years old, Micah has already been featured alongside his parents in People Magazine, Harper’s Bazaar, Parents, and other national media outlets and has modeled for fashion companies like Dôen.

“I’m excited to be chairing this year’s fashion show and so proud to see Micah honored as a GLOBAL Ambassador,” says Amanda Booth. “Our family has been part of the GLOBAL family for 8 years now, and we are blown away by what Michelle and the GLOBAL team have achieved for our children and adults with Down syndrome. They are delivering on increasing lifespan and improved health, so I hope we break all sorts of records this year!”  

Award-winning Grey’s Anatomy star Eric Dane and Author & Self-Advocate David Egan will receive GLOBAL’s highest honor – the Quincy Jones Exceptional Advocacy Award. Past recipients include Jamie Foxx, Caterina Scorsone, Colin Farrell, John C. McGinley, Eva Longoria, Kyra Phillips, and Beverly Johnson.

Eric Dane is best known for his role as Dr. Mark Sloan on ABC’s hit drama series, Grey’s Anatomy, for which he has won a Screen Actors Guild Award and been nominated for a People’s Choice Award for Favorite Cable TV Actor. He has also starred in popular movies such as Valentine’s Day and Burlesque, and TV shows including The Last Ship and, most recently, the highly acclaimed Euphoria. Dane is an active philanthropist and has been a long-time supporter of GLOBAL and the Down syndrome community.

David Egan is an accomplished athlete, author, public speaker, and life-long advocate for people with Down syndrome. He has served as a Special Olympics Sargent Shriver International Global Messenger and a Joseph P. Kennedy Jr. Public Policy Fellow, and he is an active participant in research and works with the National Institutes of Health Down Syndrome Consortium. Egan has keynoted several GLOBAL research symposia and is a member of the GLOBAL AcceptAbility Gala Committee. He recently published his first book, More Alike Than Different: My Life with Down Syndrome, which has been met with both critical and popular success.

“We lost a lot of people with Down syndrome to COVID over the last two years, so we are thrilled to turn this corner and come back with our most magical Be Beautiful Be Yourself Fashion Show,” says Michelle Sie Whitten, GLOBAL President and CEO. “We are deeply grateful to everyone who supported us through the pandemic, and we are proud to have protected so many lives and to know that our government advocacy and research is delivering on elongating life and improving health outcomes. I personally can’t wait to watch our models rock that runway!”

GLOBAL’s advocacy and lobbying efforts with Congress and outreach to the National Institutes of Health (NIH) have resulted in an unprecedented increase of the national Down syndrome research budget, from $27 million in 2016 to $115 million in 2022.

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 the CU Alzheimer’s & Cognition Center, and a dream team of medical professionals providing excellent medical care to over 2,200 patients from 33 states and 10 countries at the Anna and John J. Sie Center at Children’s Hospital Colorado.

The Be Beautiful Be Yourself Fashion Show features 20+ brilliant and beautiful models with Down syndrome, Hollywood celebrities, renowned athletes, and philanthropists from all over the world who join GLOBAL every year to be inspired and raise funds for people with Down syndrome.

To learn more, visit: https://bebeautifulbeyourself.org/

To buy tickets, visit: https://bebeautifulbeyourself.org/2022-be-beautiful-be-yourself-fashion-show-tickets/

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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 200 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 120 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndromethe 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 Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).

Press Contacts

Anca Call, acall@globaldownsyndrome.org, C: (720) 320-3832
Trisha Davis, trishdavis0707@gmail.com, C: (818) 640-9259

HISTORY-MAKING OLYMPIAN AND MOTHER OF NICO, A 2-YEAR-OLD WHO HAS DOWN SYNDROME, INSPIRES AT THE ACCEPTABILITY GALA & JOINS GLOBAL IN ADVOCATING FOR  DOWN SYNDROME RESEARCH & MEDICAL CARE FUNDING

DENVER, June 16, 2022 – Global Down Syndrome Foundation (GLOBAL) has announced that Elana Meyers Taylor, a 5-time Olympic bobsledder for Team USA, and the most decorated African American Winter Olympics athlete, has signed on as an official GLOBAL International Spokesperson, joining the ranks of Quincy Jones,  Jamie Foxx, John C. McGinley, Frank Stephens, Kyra Phillips, Beverly Johnson and Amanda Booth.

“We are thrilled to have Elana join our family” said GLOBAL President & CEO, Michelle Sie Whitten. “As mothers to children with Down syndrome, we share many similar experiences and priorities, and we are both wired to do what it takes to make sure the world is a better place for our children. Elana’s dedication, acumen, kindness, passion, and advocacy experience is already helping GLOBAL and the people with Down syndrome we serve.”

Taylor has competed in 4 Winter Olympics (2010 Vancouver, 2014 Sochi, 2018 Pyeongchang, and 2022 Beijing), won three silver Olympic medals and two bronze, and is a four-time World Champion. She made history as the first woman to earn a spot on the U.S. National Team competing with men. She is also the most decorated female bobsledder in Olympic history, and the most decorated U.S. bobsledder of any gender. Taylor was the former president of the Women’s Sports Foundation, the largest organization advocating for women in sports, and is married to fellow Team USA bobsledder and chiropractor Nic Taylor, with whom she shares Nico, a 2-year-old who happens to have  Down syndrome.

Taylor’s first appearance as a GLOBAL International Spokesperson was at the 2022 AcceptAbility Gala in Washington, DC, where she spoke about her passion for research, her family, and her partnership with GLOBAL. In her role she will be part of GLOBAL’s Champion Advisory Board working with GLOBAL to advocate in Washington, DC, her hometown of Atlanta, and around the world.

“I am truly honored to be an International Spokesperson for the Global Down Syndrome Foundation,” says Taylor. “Nico is brilliant and beautiful, and I want to be part of an organization that is making a sustained, measurable difference for his future, and for all children and adults with Down syndrome. GLOBAL’s advocacy is producing transformative and life-saving research and medical care that is already elongating life and improving health outcomes. This is why I am so enthusiastic and happy to join GLOBAL and their amazing Champion Advisory Board. ”

GLOBAL’s advocacy and lobbying efforts with Congress and outreach to the National Institutes of Health (NIH) have resulted in an unprecedented increase of the national Down syndrome research budget, from $27 million in 2016 to $115 million in 2022.

A key initiative Taylor and GLOBAL will collaborate on is increasing research and medical care that targets the unacceptable discrepancy in average lifespans between black individuals with Down syndrome and white individuals with Down syndrome. Black people with Down syndrome have an average lifespan of 36, while individuals who are white that have Down syndrome have an average life span of 60. GLOBAL is leading advocacy efforts to address this critical issue, a fight that Taylor is now helping spearhead.

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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 120 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndromethe 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 Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).

PRESS CONTACTS

Anca Call, acall@globaldownsyndrome.org, C: (720) 320-3832
Ben Enyart, benyart@globaldownsyndrome.org, C: (913) 433-4843

Scheduled for Thursday, June 23rd, the GLOBAL Roundtable Topics Include NEW Health Guidelines for Children & Adults with Down Syndrome, Promising Drugs & Clinical Trials, NIH Research, Regression, and Alzheimer’s Disease

DENVER, June 9, 2022 – Global Down Syndrome Foundation (GLOBAL) has announced its impressive lineup of Down syndrome experts who will present at the upcoming GLOBAL Research and Medical Care Roundtable at 11am on Thursday, June 23rd at the NDSC Annual Convention, held at the Hyatt Regency New Orleans.

The GLOBAL Roundtable is one of many long-term collaborations between GLOBAL and the NDSC and has now educated over 2,000 attendees on the most current and important Down syndrome research and medical care topics. The GLOBAL Roundtable is a key benefit included in the cost of the NDSC Annual Convention registration. Lunch and a coffee/snack break are included.

The GLOBAL Roundtable will kick-off with welcome addresses from Jordon Kough, Executive Director of NDSC, Bryn Gelaro, Senior Director of Research & Medical Care at GLOBAL, and Taylor Murphy, a GLOBAL self-advocate. Michelle Sie Whitten, GLOBAL President & CEO, will moderate the important gathering.

“Our GLOBAL Roundtable has developed a dedicated following, so we are thrilled to be back in-person to present an unforgettable conversation with Down syndrome experts about the latest and most important research and medical care affecting our children and adults,” says GLOBAL President & CEO, Michelle Sie Whitten. “With the publishing of the new American Academy of Pediatrics health guidelines for children with Down syndrome and our newly published family-friendly GLOBAL Adult Guideline, the timing of our roundtable couldn’t be more meaningful.”

GLOBAL Roundtable Down Syndrome Experts:

Nicole Baumer, MD, MEd – Important Updates in Pediatric Care & Potential Therapeutics in Learning, Memory and Behavior for Children with Down Syndrome

Director, Down Syndrome Program, Boston Children’s Hospital; Assistant, Department of Neurology and Developmental Medicine Center. Instructor of Neurology, Harvard Medical School

Peter D. Bulova, MD – Understanding the Co-Occurrence of Disease in People with Down Syndrome & the GLOBAL Adult Care Guideline

Professor of Medicine, Director of the International Scholars Program, Director of Outpatient Procedure Clinic, Coordinator of the Internal Medicine Medical Student Interest Group, Co-Director of the Magee Center for Women with Disabilities, and Director of the University of Pittsburgh Adult Down Syndrome Center

Joaquín Espinosa, PhD – Promising Research & Clinical Trials that Aim to Elongate Life and Improve Health Outcomes
Executive Director for Science at the Linda Crnic Institute for Down Syndrome, Professor in the Department of Pharmacology at the University of Colorado Denver School of Medicine, co-Leader of the Molecular Oncology program at the University of Colorado Cancer Center, and founding Director of the Functional Genomics Facility at the University of Colorado

Sigan L. Hartley, PhD – Alzheimer’s and Down Syndrome: Sleep, Physical Activity and Cognitive Biomarkers
Associate Professor, Human Development and Family Studies, Associate Director, Training, Waisman Center; Associate Professor, 100 Women Distinguished Chair in Human Ecology, Director of SoHE Graduate Studies, University of Wisconsin-Madison

Melissa Parisi, MD, PhD – NIH Down Syndrome Research Funding; INCLUDE Update & Community Participation
Chief of the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)

Jonathan D. Santoro, MD – Regression/Disintegrative Disorder in Individuals with Down Syndrome: The Latest Research
Medical Director, Neuroimmunology and Demyelinating Disorders Program; Attending Physician, Division of Neurology; Assistant Professor of Neurology, Keck School of Medicine of USC

Seating is limited, so it’s important for interested convention attendees to register for the GLOBAL Roundtable as soon as possible. This year marks the 50th anniversary of the Convention, which is the largest conference for people with Down syndrome in the world, attracting thousands of attendees every year.

To register or learn more about the GLOBAL Roundtable and GLOBAL speakers, visit: bit.ly/GLOBALRoundtableNDSC

To learn more about GLOBAL’s important workshops and deep dives at the NDSC, bit.ly/2022NDSC-GLOBALWorkshops

For more information about the NDSC 50th Annual Convention, visit: bit.ly/NDSC50Convention

 

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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 120 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndromethe 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 Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome

Contact

Anca Call
Global Down Syndrome Foundation
anca.consultant@globaldownsyndrome.org
(720) 320-3832

Senators Steve Daines (R-MT) and John Hickenlooper (D-CO) Honored

WASHINGTON, D.C. – Tuesday evening, the Global Down Syndrome Foundation (GLOBAL) held its annual AcceptAbility Gala at the Marriott Marquis Washington, DC. The event attracted nearly 300 attendees and raised $400,000 for life-changing research and medical care for people with Down syndrome.

The AcceptAbility Gala was emceed by power-couple Kyra Phillips, an award-winning ABC anchor and correspondent, and John Roberts, co-anchor of ‘America Reports with John Roberts and Sandra Smith’ on Fox News. Senators Steve Daines (R-MT) and John Hickenlooper (D-CO) received GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award, for their strong advocacy in Congress on behalf of people with Down syndrome.

“Increased funding is essential to meaningful Down syndrome research that will result in longer lives and improved health outcomes for people with Down syndrome — it also supports our larger effort to find treatments for diseases that contribute to more than half of all deaths in our country,” said Senator Daines. “Everyone must endeavor to advance this critical research.”

“People with Down syndrome are our family members, students, friends, and colleagues,” said Senator Hickenlooper. “We need to recognize their valuable contributions to society and promote equity and inclusion. I’m honored to have played a small role supporting the Global Down Syndrome Foundation in their tireless efforts to increase research funding and improve medical care.”

During the event, Jonah Berger, a 10-year-old with the dual diagnosis of Down syndrome and autism, was recognized as GLOBAL’s 2022 Ambassador and brought everyone to their feet. American Authors, a popular triple platinum rock bank, delighted the audience with their biggest hits, including “Best Day of My Life,” while the inclusive dance troupe RhythmXpress and solo dancer Robert Wallop wowed attendees.

“The energy, acceptance, and love in the room Tuesday night is a true testament to the inclusive societal impact we’re generating around dramatically increasing funds for research and medical care for people with Down syndrome,” said GLOBAL Co-Founder, President, and CEO, Michelle Sie Whitten. “Senators Daines and Hickenlooper, over a dozen of our Congressional Champions, our friends from NIH, Ambassador Jonah Berger, and over forty attendees with Down syndrome, along with celebrities such as the American Authors, Robert Wallop, and Olympic Champion Elana Meyers Taylor, highlighted the tangible impact we are making.”

Additional notables included Senator Roy Blunt, Congresswoman Jaime Herrera Beutler, Congresswoman Eleanor Holmes Norton, and Congressman Pete Stauber.

Read Senator Steve Daines’ op-ed, Individuals With Down Syndrome Deserve Better, written in solidarity with GLOBAL’s AcceptAbility Gala in The Washington Times.
To learn more about GLOBAL, visit www.globaldownsyndrome.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 2,000 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 120 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndromethe 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 Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).

Contacts

Cora Mandy, cmandy@pluspr.com, C: (203) 980-1940
Anca Call, acall@globaldownsyndrome.org, C: (720) 320-3832

Senators Steve Daines (R-MT) and John Hickenlooper (D-CO) To Be Honored

Washington, DC, May 12, 2022 (GLOBE NEWSWIRE) — The Global Down Syndrome Foundation’s (GLOBAL) annual AcceptAbility Gala will take place on May 24, 2022 at the Marriott Marquis Washington, DC, beginning at 6:00pm EST. The event will raise critical funds and awareness for life-changing research and medical care for people with Down syndrome.

Senator Steve Daines (R-MT) and Senator John Hickenlooper (D-CO) will receive GLOBAL’s highest honor – the Quincy Jones Exceptional Advocacy Award – in recognition of their dedication, support and advocacy efforts. Jonah Berger will be recognized as GLOBAL’s 2022 Ambassador.

Kyra Phillips, an award-winning ABC journalist, and John Roberts, co-anchor of ‘America Reports’ on Fox News, will emcee the event. The gala will also feature live performances from the popular rock band, American Authors, the inclusive dance troupe, RhythmXpress, and Robert Wallop, a professional dancer with Down syndrome. Celebrities such as Olympic Champion Elana Meyers Taylor will also join the inspirational event.

GLOBAL is the leading Down syndrome research and medical care non-profit in the United States. The AcceptAbility Gala honors GLOBAL’s champions and celebrates the contributions of people with Down syndrome.

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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 2,000 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 120 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndromethe 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 Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).

Contact:

Anca Call
Global Down Syndrome Foundation
anca.consultant@globaldownsyndrome.org
(720) 320-3832
Cora Mandy
Plus Communications
cmandy@pluspr.com
(203) 980-1940

ATLANTA, DENVER, NEW YORK (April 27, 2022) – Last week, the U.S. Food and Drug Administration (FDA) warned the public of the risk of false results, inappropriate use, and inappropriate interpretation of results with non-invasive prenatal screening tests (NIPS), also called non-invasive prenatal tests (NIPT), or cell-free DNA tests. These tests look for signs of genetic abnormalities in a fetus by testing a sample of blood from a pregnant patient.

For years, the nation’s three leading Down syndrome advocacy organizations – Global Down Syndrome Foundation (GLOBAL), the National Down Syndrome Congress (NDSC), and the National Down Syndrome Society (NDSS) – have expressed concerns over the use of, and misconceptions surrounding, these tests, due to their unregulated status. The potential for false positives, egregious mislabeling as diagnostic rather than screening tests, and the fact that some private testing companies are providing their own information about Down syndrome to pregnant women and families must be addressed.

Jeff Shuren, M.D., J.D., Director of the FDA’s Center for Devices and Radiological Health, said, “While genetic non-invasive prenatal screening tests are widely used today, these tests have not been reviewed by the FDA and may be making claims about their performance and use that are not based on sound science.”

Together, GLOBAL, NDSC, and NDSS publish the Prenatal Testing and Information about Down Syndrome (PTP), the nation’s most widely distributed pamphlet about NIPS and Down syndrome.

An important updated version of the PTP will be released this summer to reflect the FDA’s concerns and include information about and links to the 2022 Health Supervision for Children and Adolescents with Down Syndromepublished by the American Academy of Pediatrics just last week.

“We believe that it is important for parents to have, and physicians to provide, accurate, up-to-date information so that patients make decisions based on facts, not fear,” said David Tolleson, Senior Advisor Strategic Alliances at GLOBAL.

“It is very important that the public understands the limitations of these screening tests,” added Jordan Kough, Executive Director of NDSC. “In some cases, decisions are being made based on inaccurate information.”

“The FDA has warned that advertisements claiming these types of tests are ‘reliable,’ ‘highly accurate,’ and ‘offer peace of mind,’ may not be supported with sound scientific evidence,” concurred Kandi Pickard, President & CEO of NDSS. “This warning proves that, now more than ever, it is important to get accurate information – like our joint PTP – into the hands of doctors and pregnant women and families.”

Patients, healthcare providers, and the public may download the Prenatal Testing and Information about Down Syndrome pamphlet for free in English, Spanish, or Icelandic at each organization’s website. Print copies are available upon request.

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Global Down Syndrome Foundation (GLOBAL)
The Global Down Syndrome Foundation is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.

National Down Syndrome Congress (NDSC)
The National Down Syndrome Congress is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome.

National Down Syndrome Society (NDSS)
The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome.

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Press Contacts:

GLOBAL:
Anca Elena Call
acall@globaldownsyndrome.org
(720) 320-3832

NDSC:
Rhonda Rice
rhonda@ndsccenter.org
(678) 770-6641

NDSS:
Michelle Sagan
media@ndss.org
(301) 728-0447

April 11, 2022

Your advocacy is making a difference! The Down Syndrome Coalition, along with our colleagues from the Down Syndrome Diagnosis Network (DSDN), Down Syndrome Medical Interest Group-USA (DSMIG), International Mosaic Down Syndrome Association (IMDSA), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG), and in partnership with our self-advocates and families, succeeded in removing discriminatory language from an important healthcare coverage determination that would have excluded people with Down syndrome from clinical trials for a new class of Alzheimer’s treatments. With more than 1,800 individual comments submitted by the Down syndrome community, this community’s voice was too loud to ignore, and we are one step closer to our goal of making sure adults with Down syndrome have equitable access to treatment options for Alzheimer’s disease.

Together we strive to ensure that governmental entities, such as Centers for Medicare & Medicaid Services (CMS), the Food and Drug Administration (FDA), and the National Institutes of Health (NIH), as well as private pharmaceutical companies, are all working to provide equitable access to Alzheimer’s treatments for the Down syndrome community now and in the future. This work is critical because it is estimated that the lifetime risk for people with Down syndrome to develop Alzheimer’s disease is over 90%. Alzheimer’s disease is the leading cause of death for members of our community. The next phase of our collective advocacy must be focused on supporting the inclusion of people with Down syndrome in clinical trials for Alzheimer’s treatments.

The Down Syndrome Coalition includes the following national organizations (in alphabetical order): Down Syndrome Affiliates in Action (DSAIA), GiGi’s Playhouse Down Syndrome Achievement Centers, Global Down Syndrome Foundation (GLOBAL), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), and the National Down Syndrome Society (NDSS).