Shia LaBeouf has a message for YOU! Shia’s breakout film, The Peanut Butter Falcon, co-starring Global’s Quincy Jones Exceptional Advocacy Award winner, Zack Gottsagen, is now the most successful indie film of the year! Last year at Global’s Be Beautiful Be Yourself Fashion Show, co-stars Shia and Dakota Johnson danced on stage with Zack as he accepted his award with celebratory roars from Armory Films producers and writers/directors Tyler and Michael below in the audience.

Zack and his crew had planned to attend this year but we are thrilled to announce they cannot – BECAUSE (wait for it) – Zack’s performance in The Peanut Butter Falcon has earned Oscar buzz and the entire crew needs to be in LA so that Zack can be the FIRST (but not last) actor with Down syndrome to be nominated for an Academy Award!

Global is a proud executive producer of the film, and wants more actors with Down syndrome in Hollywood! Please join us in our fight for health and research equity for people with Down syndrome at the LARGEST fundraiser for Down syndrome in the world! Learn more here: www.bebeautifulbeyourself.org

To learn more about Peanut Butter Falcon click here.

Celebrities vow to raise awareness and funds for life-saving and transformative medical care & research at Global’s Be Beautiful Be Yourself Fashion Show

Top Row (L-R): Quincy Jones, Henry Winkler, Laura Linney, Terrell Davis, Charlotte Fonfarra-LaRose; Bottom Row (L-R): Eric Dane, Shamari and Ronnie Devoe, John C. McGinley, Amanda Booth, Megan Bomgaars

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

Denver, CO (October 22, 2019) – Today the Global Down Syndrome Foundation (Global) announced Emmy Award-winning actor, producer, and director Henry Winkler; Academy Award-nominated and award-winning television and film actress Laura Linney; NFL Hall of Famer Terrell Davis, and R&B royalty and husband-wife dream team Shamari and Ronnie DeVoe will join its celebrity lineup for the 11th annual Be Beautiful Be Yourself Fashion Show at the Sheraton Denver Downtown Hotel, 1550 Court Place, on Saturday, November 2. The marquee event is the largest Down syndrome fundraiser in the world.

Winkler, Linney, Davis, and the DeVoes will join Global in honoring their 2019 Quincy Jones Exceptional Advocacy Award (Q-Award) winners and stars, Amanda Booth and Megan Bomgaars. Both women are passionate advocates for the differently-abled community, and Megan herself has Down syndrome.

Other confirmed celebrities for the Be Beautiful Be Yourself Fashion Show include: music legend and inspiration behind the Q-Award, Quincy Jones; Global board member and award-winning actor John C. McGinley; award-winning actor Eric Dane; Q-Award winner DeOndra Dixon; U.S. Squad World Cup team member and Colorado Rapids player Kellyn Acosta; supermodel and Instagram influencer Mikaela Hoover; 2019 Miss Colorado Monica Thompson; and Denver Broncos cheerleaders Jozie, McKenna, and more.

Twenty-three models with Down syndrome from around the world, traveling from as far as India and London, will rock the runway with celebrity escorts. At the event, Global will also honor the 2019 Be Beautiful Be Yourself Ambassador Charlotte Fonfara-LaRose, while celebrating the return of past Ambassadors and Q-Award winners: DeOndra Dixon and Clarissa Capuano.

For over a decade Global has funded transformative and life-saving research and medical care through its affiliates – the Linda Crnic Institute for Down Syndrome and the Rocky Mountain Alzheimer’s Disease Center both at University of Colorado Anschutz Medical Campus, and the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

Since Down syndrome is one of the least funded genetic conditions by the National Institutes of Health (NIH), Global depends on fundraising events to underwrite important work. This work includes Global’s lobbying Congress and outreach to NIH which has resulted in nearly a tripling of the NIH Down syndrome research budget – from $27 million in 2016 to $77 million in 2019.

“We are excited to share that Global’s unabating and difficult work in Washington, D.C. continues to succeed with the promise of elongating life and dramatically improving health outcomes for people with Down syndrome,” says Global President and CEO, Michelle Sie Whitten. “This wouldn’t be possible without the funds raised at the Be Beautiful Be Yourself Fashion Show and the support of our amazing donors, dedicated Congressional and NIH Champions, passionate self-advocate and families, and our brilliant researchers and medical professionals.”

Various levels of Be Beautiful Be Yourself Fashion Show tickets, table sponsorships, and model sponsorships are available, including VIP levels at www.bebeautifulbeyourself.org.

About Global Down Syndrome Foundation

Established in 2009, Global Down Syndrome Foundation (Global) is a non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Global is part of a network of affiliates who work together to deliver on our mission, supporting hundreds of scientists and medical care professionals. Our affiliates include the Sie Center for Down Syndrome, the Crnic Institute for Down Syndrome, Rocky Mountain Alzheimer’s Disease Center and a new pilot Adult Clinic. For more information, visit globaldownsyndrome.org and follow us on social media (Facebook, Twitter @GDSFoundation, Instagram @globaldownsyndrome).

Global Down Syndrome Foundation and Local Down Syndrome Affiliates Help Ensure A Big Opening Weekend Triggering 1,000 Screen Expansion

Global Celeb Lineup Amanda Booth, Charlotte Fonfara-LaRose, Mikaela Hoover, Megan Bomgaars

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

Denver, CO (September 18, 2019) – Today, the Global Down Syndrome Foundation (“Global”) announced supermodel and actress Amanda Booth and TV star and entrepreneur Megan Bomgaars will receive Global’s Quincy Jones Exceptional Advocacy Award (“Q Award”), as well as its initial celebrity lineup for the Be Beautiful Be Yourself Fashion Show. The marquee event is the largest Down syndrome fundraiser in the world, raising over $18 million for life-saving and life-changing research and medical care to date. An estimated fourteen hundred attendees including models with Down syndrome, Hollywood and sports celebrities, philanthropists, and government officials will head to the Sheraton Denver Downtown Hotel, 1550 Court Place in Denver on Saturday, November 2.

Booth has worked on fashion editorials and advertising campaigns for Harper’s Bazaar US and Australia, Glamour Magazine UK, Elle, Anthropologie and more. Booth uses her fashion platform in top publications and on social media to support Global’s important work and to share her journey of parenting a beautiful son who happens to have Down syndrome. Recently, Booth and her son appeared on the cover of Vogue Living Netherlands, making Micah the first person with Down syndrome to be featured on a Vogue magazine cover.

Bomgaars, a woman with Down syndrome herself, regularly represents Global at conferences and events, including this year’s Trisomy 21 Research Society International Conference in Barcelona, Spain and the National Down Syndrome Congress Annual Convention in Pittsburgh, Pennsylvania. An inspiration to everyone to follow their dreams, the 26-year-old has starred in the four-time Emmy Award-winning television series Born this Way, was selected by the White House to attend former first lady Michelle Obama’s Beating the Odds summit, and has developed a clothing line and a makeup line with Sanrio’s “Hello Kitty” and ArtPop Cosmetics respectively.

Other confirmed celebrities for the Be Beautiful Be Yourself Fashion Show include: Music Legend and inspiration behind the Q Award, Quincy Jones, Global board member and award-winning actor John C. McGinley, award-winning actor Eric Dane, supermodel and Instagram influencer Mikaela Hoover and award-winning actor from the breakout indie film The Peanut Butter Falcon, Zack Gottsagen. A full roster of celebrities will be announced in the coming weeks.

During the fashion show, 23 brilliant and beautiful models with Down syndrome will rock the runway. The event will also honor the 2019 Global Ambassador Charlotte Fonfara-LaRose, while celebrating the return of past Ambassadors and Q-Award winners: DeOndra Dixon, Zack Gottsagen, and Clarissa Capuano.

“We are proud of our accomplishments and we are deeply grateful for the support we receive from our amazing families, congressional champions, the National Institutes of Health, and professionals who empower us to save and transform the lives of people with Down syndrome every day,” said Michelle Sie Whitten, President, CEO and Co-Founder of the Global Down Syndrome Foundation. “The proceeds from this spectacular event help fund over 200 scientists working on elongating life, and a dream team of medical professionals providing excellent medical care to over 1,700 patients from 28 states and 10 countries.”

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 Down syndrome research budget, from $27 million in 2016 to an estimated $77 million in 2019.

About Global Down Syndrome Foundation

Established in 2009, Global Down Syndrome Foundation (Global) is a non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Global is part of a network of affiliates who work together to deliver on our mission, supporting hundreds of scientists and medical care professionals. Our affiliates include the Sie Center for Down Syndrome, the Crnic Institute for Down Syndrome, Rocky Mountain Alzheimer’s Disease Center and a new pilot Adult Clinic. For more information, visit globaldownsyndrome.org and follow us on social media (Facebook, Twitter @GDSFoundation, Instagram @globaldownsyndrome).

Global Down Syndrome Foundation and Local Down Syndrome Affiliates Help Ensure A Big Opening Weekend Triggering 1,000 Screen Expansion

Left Photo: Global invites its members to a private screening of The Peanut Butter Falcon at the Sie Film Center. (L-R): Mac Macsovits, Tyler Nilson, Hanna Atkinson, Michelle Sie Whitten, Connor Long, and Michael Schwartz. Right Photo: The crew is all smiles after winning the “Audience Award” at the 2019 SXSW Film Festival. (L-R): Michael Schwartz, Zack Gottsagen, Shia LaBeouf, Tyler Nilson

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

Denver, CO (August 29, 2019) – Armory Films and The Roadside Attractions took a chance on The Peanut Butter Falcon, an indie film featuring an actor with Down syndrome – and now it is paying dividends. Despite having a limited 17-screen debut, the break-out film was the highest grossing film per-theater amongst all opening films in early August, and has a 95% rating on Rotten Tomatoes.

Global Down Syndrome Foundation (Global), an executive producer of the film, worked with its local Down syndrome affiliates in 15 states to help ensure a strong opening weekend that in turn would trigger a nationwide release to 1,000 screens.

Global activated its base of thousands of members, local and national Down syndrome organizations, medical professionals, self-advocate families, and Hollywood celebrities to help promote the film and drive ticket sales. Global marketed the film on social media sparking millions of likes and through ticket promotions with its member organizations. Global also co-sponsored and co-organized tickets and events with Arc Thrift, Down Syndrome Affiliates in Action, Down Syndrome Association of Central Ohio, Down Syndrome Association of Greater Charlotte, Down Syndrome Association of Greater Cincinnati, Down Syndrome Association of Greater Winston-Salem, Down Syndrome Association of Minnesota, Down Syndrome Association of Tampa Bay, Down Syndrome Community of Puget Sound, Down Syndrome Connection of the Bay Area, Down Syndrome Foundation of Florida, Down Syndrome Guild of Dallas, Down Syndrome Network of Arizona, Down Syndrome Network of Montgomery County, Gold Coast Down Syndrome Organization, Mi Work Matters, National Down Syndrome Congress, Rocky Mountain Down Syndrome Association, and Triangle Down Syndrome Network. In some cities, the events were so popular there were long lines outside theaters.

Additional marketing efforts from Global included underwriting grants for theater tickets and concessions, organizing raffles for complimentary movie tickets, securing press at premiere and screening events, and creating collateral for the community to share through email and social media.

“I was worried because we only had five days lead time to market the film,” said Michelle Sie Whitten, President & CEO of Global Down Syndrome Foundation. “But in every city where we partnered with our strong local member organizations, we literally sold the entire theater out within one or two hours. There’s a reason this film has amazing reviews in The Wall Street Journal, The Washington Post, Vanity Fair, and The New York Times. The writing, the directing, the acting – it has it all – and everyone should go see this film!”

The making of The Peanut Butter Falcon started with an ambitious aspiring actor, Zack Gottsagen, and two talented filmmakers, Tyler Nilson and Michael Schwartz, willing to take risks. Nilson and Schwartz wrote the script specifically for Zack and initially faced difficulty pitching the idea to producers. “We were rejected by lots of places because we wouldn’t cast a more famous actor without a disability as the lead,” Nilson recalls. “But Zack could play the role better than anyone else, not just because he has Down syndrome himself, but because he’s also an incredible actor.” When Armory Films heard their concept, they loved it right away and along with their partners Albert Berger and Ron Yerxa, were able to help recruit notable stars LaBeouf and Johnson.

Armory Films, the production company, and The Roadside Attractions, the distributor, hosted over 100 private screening events in more than 50 different U.S cities. The A-list cast members attended several of these events for meet-and-greets and private Q&A sessions with the audience.

“We are so grateful to the Global Down Syndrome Foundation for providing us important feedback and for going above and beyond for The Peanut Butter Falcon’s opening weekend,” said Schwartz. “Last year we had the privilege of attending Global’s Be Beautiful Be Yourself Fashion Show where they honored Zack as their Quincy Jones Exceptional Advocacy Award Winner. We hope this film not only helps level the playing field for people with Down syndrome but also draws attention to Global’s great work.”

Moving performances by Shia LaBeouf, Dakota Johnson, and Zack Gottsagen led to awards at SXSW and other film festivals. At a recent event surrounded by media, Zack explained his newfound success, “I want to show people that no matter who you are, if you follow your heart, you can do whatever you want with your life.”

To learn more about the film and to go see it in theaters, visit www.globaldownsyndrome.org/peanut-butter-falcon

About Global Down Syndrome Foundation

Established in 2009, Global Down Syndrome Foundation (Global) is a non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Global is part of a network of affiliates who work together to deliver on our mission, supporting hundreds of scientists and medical care professionals. Our affiliates include the Sie Center for Down Syndrome, the Crnic Institute for Down Syndrome, Rocky Mountain Alzheimer’s Disease Center and a new pilot Adult Clinic. For more information, visit globaldownsyndrome.org and follow us on social media (Facebook, Twitter @GDSFoundation, Instagram @globaldownsyndrome).

Global is outraged!

Macy Lace, a nine-year-old girl with Down syndrome who is immobile, has been denied a walking frame from the National Health Service (NHS) in the UK. This denial left Macy unable to do physiotherapy for 18 months after intensive hip surgery, which her mother says reverses any progress she had been making to walk.

Macy was able to obtain a walking frame a local education service, but it can only be used during school hours. Her doctors say that if she uses her walking frame at home and at school, she can quickly develop the strength to walk.

Global Down Syndrome Foundation works hard every day to ensure Down syndrome research gets its share of funding for our children and adults to receive proper medical care. Discrimination against one person with Down syndrome is discrimination against all people with Down syndrome.

SUMMER 2019

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Overview & Speakers:

This webinar reviews how the Global Down Syndrome Foundation (Global) has worked with Self-Advocates, Congressional Champions, Scientists and the National Institutes of Health (NIH) to increase Down syndrome research funding at the NIH for the first time in nearly twenty years. Key takeaways from this presentation include:

• The importance of research and medical care in elongating life and improving the quality of life

• The history of Down syndrome being one of the least funded genetic conditions at the NIH

• Global’s AMAZING progress – science and NIH funding

• The Challenges still ahead

• What Self-Advocates and families can do to support life-changing and life-saving research and medical care for people with Down syndrome

Michelle Sie Whitten, MA

Michelle Sie Whitten, MA is the Co-Founder, President and CEO of the Global Down Syndrome Foundation (Global). Global is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education, and Advocacy. Prior to her career in the non-profit sector, Michelle was a cable TV pioneer in East Asia working for Liberty Media Corporation and Starz Encore. Her academic career was focused on international security and diplomacy and she holds a Masters degree and business certificate from Harvard University. She graduated Magna Cum Laude with a Bachelors degree from Tufts University and studied Mandarin Chinese and Women Studies at Peking University. Michelle is married to Tom, a British curator of Chinese contemporary art and they have two adorable kids, one of whom has Down syndrome.

Kevin Brennan

Kevin Brennan partners with clients to craft and execute strategies involving public policy and government advocacy, with a particular focus on the health and biosciences, renewable energy, insurance and financial services, and food and agribusiness industries. Kevin draws from his experience as legislative staff for three Members of Congress and in senior government affairs positions at Amgen and the Arthritis Foundation to help clients advance their federal advocacy objectives.

Powerpoint Presentation: Click to Download

Important Notice

The Global Down Syndrome Foundation’s employees and/or volunteers are NOT acting as your medical professional or attorney. Responses you receive via electronic mail, phone, or in any other manner DO NOT create or constitute a doctor-patient or attorney-client relationship between you  and the Global Down Syndrome Foundation (Global), or any employee of, or other person associated with, Global.

Information received from Global’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. Globaldownsyndrome.org DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.

Left to Right: Dr. Vellody and his brother Das present Dr. Joaquin Espinosa with 2019 President’s Award

The Global Down Syndrome Foundation was honored to accept the prestigious President’s Award at the 2019 NDSC Annual Convention. Presented at the Annual Convention Opening Session, Global was awarded for their dedication to Down syndrome research, their unprecedented advocacy work, and their tremendous positive impact on the Down syndrome community. Global’s longstanding relationship with the National Down Syndrome Congress will continue to flourish and together, they will work to improve the lives of individuals with Down syndrome.

Awardees Announced at the National Down Syndrome Congress Annual Convention Include Twelve Organizations from the US and Abroad

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

Pittsburgh, PA (June 27, 2019) – Today, the Global Down Syndrome Foundation (Global) awarded $75,000 to twelve of its member organizations, bringing the total given through its Educational Grants program to over $625K. Since 2012, Global has awarded grants to 72 innovative educational programs developed by local, national and international Down syndrome organizations. This year’s grants will fund programs in Alaska, Honduras, Indiana, Kansas, Minnesota, Nebraska, New Jersey, Ohio, Tennessee, and Texas. The grant awards were announced at the Global Down Syndrome Foundation Research & Medical Care Roundtable during the NDSC Annual Convention, which attracted nearly 4,000 attendees in Pittsburgh, PA.

“We are so inspired by the efforts of Down syndrome organizations all over the world working to make a difference in their communities,” said Michelle Sie Whitten, President and CEO of Global. “Global is proud to say that in just 8 years, our Educational Grant program has helped serve over 14,000 self-advocates, parents, caregivers, and professionals. We are thrilled to be able to fund the most grants ever in one cycle this year, and we are excited to see these extraordinary programs in action.”

The 2019 Global Educational Grant recipients and their funded programs are (in alphabetical order):

1. Alaska Down Syndrome Network (Anchorage, AK) “Alaska Regional Conference” will bring families from rural and small towns to Anchorage for a weekend conference to gain more knowledge on medical issues, behavioral issues, and education topics as well as connect with other area families.

2. Down Syndrome Association of Greater Cincinnati (Cincinnati, OH) “Caring for the Adult with Down Syndrome” will bring medical experts to Cincinnati Children’s Hospital Thomas Center for Down Syndrome for Grand Rounds presentations to introduce medical professionals to the newly revised Medical Care Guidelines for Adults with Down Syndrome.

3. Down Syndrome Association of Indiana, Inc. (Indianapolis, IN) “Public Policy 101” is a series of live workshops and webinars which will cover a variety of topics related to preparing participants to take action on public policy issues, such as how to contact your local legislator, current issues facing families of children with Down syndrome, and more.

4. Down Syndrome Association of Memphis & the Mid-South (Cordova, TN) “Individual Education Plan (IEP) Coaching/Seminar” will bring educational experts to the Memphis area for a monthly seminar to give parents and teacher the tools and knowledge necessary to have successful IEPs.

5. Down Syndrome Association of Middle Tennessee (Mt. Juliet, TN) “Extraordinary Lives Conference” is a one-day conference that will bring in national and regional professionals to share their expertise in the latest research and best practices for helping those with DS through three tracks for educators, caregivers, and self-advocates.

6. Down Syndrome Association of Minnesota (St. Paul, MN) “Statewide Learning Conference” is a weekend conference that will inspire and equip parents and individuals with Down syndrome with the most up to date information, research, and best practices in healthcare, inclusive education, community integration, and economic self-sufficiency.

7. Down Syndrome Association of the Valley (Boardman, OH) “Summer Enrichment Program with Aaris Therapy” is a comprehensive weeklong program where participants with Down syndrome will concentrate on effective communication and improving social skills to help build important learning skills in the education process.

8. Green Oaks Education and Support, Inc. (Arlington, TX) “Improving Health and Wellness through Education and Practice” is a two-part program involving an interactive cardio workout for people with Down syndrome to improve their level of physical activity and an educational series for caregivers to promote health in the home.

9. Hearts2Honduras, Inc. (El Progreso, Honduras) “Love and Learn 21 Program” is designed to provide educational opportunities for people with Down syndrome in Honduras. Teachers will partner with participants and their families to create individualized plans in an effort to meet the needs of each student.

10. Inclusion Connections (Olathe, KS) “EmployAbility” provides the educational opportunities and vocational training needed for young adults with Down syndrome and other developmental disabilities to acquire the necessary skills and knowledge required to obtain paying jobs.

11. KIIDS, Inc. (Bellmawr, NJ) “Pathways to Independence” will consist of a series of workshops, each with a specific focus and aligned with the long-term goal of establishing skills and knowledge to enable middle and high school aged people with Down syndrome to successfully navigate the choices, freedoms and challenges that come along with the transition to teen and adulthood and to become as independent as possible.

12. Little Leaf Learning Center, Inc. (Omaha, NE) “Operation School Success” is designed to assist families and children with Down syndrome in their transition from pre-school classes into kindergarten. This includes IEP training, education on rights, legal counselling, and parent to parent discussion groups for parents.

“Global Down Syndrome Foundation has enriched the lives of individuals with Down syndrome of all ages,” said Jim Hudson, Executive Director of Down Syndrome Association of Greater Cincinnati. “In 2015, we received a Global Educational Grant for our academic program for children with Down syndrome ages K-8. This year, we were lucky enough to receive another grant for our program to care for adults with Down syndrome. We are so appreciative to partner with Global on bettering the lives of people with Down syndrome at all stages of their lives.”

“We are honored to receive a grant for our ‘Statewide Learning Conference’ from Global, a true leader in research and medical care for people with Down syndrome” said Sarah Curfman, Executive Director of Down Syndrome Association of Minnesota. “We look forward to collaborating with Global on best practices for creating resources for families and educators, plus hosting a successful event.”

About Global Down Syndrome Foundation

Established in 2009, Global Down Syndrome Foundation (Global) is a non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Global is part of a network of affiliates who work together to deliver on our mission, supporting hundreds of scientists and medical care professionals. Our affiliates include the Sie Center for Down Syndrome, the Crnic Institute for Down Syndrome, Rocky Mountain Alzheimer’s Disease Center and a new pilot Adult Clinic. For more information, visit globaldownsyndrome.org and follow us on social media (Facebook, Twitter @GDSFoundation, Instagram @globaldownsyndrome).