Archive for August, 2019

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 Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Callacall@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.

Discrimination and Down syndrome

August 21st, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM Issue 1 2015

Instances of discrimination in England, Australia, and Thailand have sparked international outrage among citizens who have Down syndrome, their families, and society at large. They also force us to acknowledge the need for education.


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

IT’S IMPOSSIBLE TO know what kind of response @InYourFaceNYer expected when she tweeted former Oxford professor, evolutionary biologist and famed atheist writer Richard Dawkins an ethical dilemma: What should she do if she were pregnant with a child with Down syndrome? But even those familiar with Dawkins’ beliefs were shocked at his response: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”

Dawkins’ comments came on the heels of another headline grabber covered by CNN, Fox News, the BBC and other major media outlets — in August 2014 an Australian couple, who hired a Thai surrogate mother to carry their biological child (which became twins) via in vitro fertilization, left one of the twin infants, Gammy, with the surrogate after learning the child had Down syndrome.

Both incidents illustrate that acceptance and equality for those with Down syndrome and other disabilities is still very much at stake.
“Discrimination against people with Down syndrome, even in developed nations, is profound,” said Michelle Sie Whitten, Executive Director of Global Down Syndrome Foundation. “The reality is that the condition is almost completely different from what it was just 20 years ago. For example, the lifespan of a person with Down syndrome in the 1980s was 28 years old, and today it is nearly 60.”

SIGNIFICANT IMPROVEMENT BUT A LONG WAY TO GO

In the United States, recently retired Iowa Sen. Tom Harkin authored and sponsored the Americans with Disabilities Act. The ADA is a wide-ranging civil rights law prohibiting discrimination based on disability. Essentially, it expanded on the great work of activists who passed the Civil Rights Act of 1964, which made it illegal to discriminate based on race, religion, sex, and national origin.

Despite passage of the ADA, people with intellectual disabilities face an uphill battle. In 2012, the People with Disabilities Foundation won a lawsuit against the Social Security Administration for terminating benefits for people with intellectual disabilities without communicating the complexities of agency requirements in a manner that people with intellectual disabilities could understand.

There are also discrimination and prejudices that can be seen from various surveys. In an essay published in the book Prenatal Testing and Disability Rights, ethicist and sociologist Dorothy Wertz, Ph.D., cites surveys she’s conducted in which 13 percent of genetics professionals say they actively emphasize negative aspects of having a child with Down syndrome and 10 percent actively encourage termination. In another 2006 study by the American Congress of Obstetricians and Gynecologists, over 40 percent of professionals rated their training in delivery of prenatal diagnoses as “barely adequate” or “nonexistent.”

“People with Down syndrome have been subject to exclusion from society and from discrimination across the board — in educational settings, employment, and in their communities,” said David Tolleson, Executive Director of the National Down Syndrome Congress. “Much of it is due to a lack of understanding and education and exposure to people with Down syndrome.”

MAINSTREAM U.S. SHOWS TRENDING SUPPORT

It appears educating professionals and the government should be a top priority for advocacy groups. Mainstream Americans, however, overwhelmingly embrace the idea that people who are “disabled” or differently-abled are different but equal.

According to a nationwide poll, more than 75 percent of Americans believe people with Down syndrome have the right to vote, buy a home, and get married. Ninety-six percent believe children with Down syndrome should have a right to attend their local public schools and 75 percent believe it not only benefits the child with Down syndrome but also the typical child in the classroom. An impressive 97 percent of Americans agree that people with Down syndrome should have the chance to hold a job and deserve fundamental human and civil rights.

There is no lack of illustrious counterweights to both the Dawkins incident and the baby Gammy incident. Marilyn Coors, Ph.D., Professor of Bioethics and Genetics at the University of Colorado Denver, weighed in: “I would like to ask Professor Dawkins if he has ever spent time with a child or adult with Down syndrome. Has he experienced their continual joy and happiness to be alive? Does he understand the beauty they bring to the world? His comment reveals his lack of knowledge of the lived experiences of those with Down syndrome and their families.”

A survey published in the American Journal of Medical Genetics shows that around 99 percent of people with Down syndrome indicate they are happy with their lives and love their families. The vast majority of surveyed parents of children with Down syndrome report having a more positive outlook on life because of their child, and nearly 90 percent of siblings feel they are better people because of their sibling with Down syndrome.

HOPE FOR THE FUTURE

In Gammy’s case, the good clearly outweighs the bad, as the surrogate mother agreed to raise the child herself. A fundraising campaign to help support the surrogate mom and pay for Gammy’s medical expenses drew upwards of 6,000 donations from around the world. More than $240,000 was raised for the child in four months.

Down syndrome advocacy groups were able to use the opportunity to educate a much wider audience through national press and get basic facts into the hands of many people outside the Down syndrome community.


Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
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From Down Syndrome WorldTM Issue 3 2018

THANKS TO GLOBAL’S GROWING NATIONWIDE NETWORK OF ADVOCATES AND SELF-ADVOCATES, BRILLIANT AND PASSIONATE SCIENTISTS, AND OUR CONGRESSIONAL CHAMPIONS — SENATORS ROY BLUNT (R-MO), PATTY MURRAY (D-WA), AND CHRIS VAN HOLLEN (D-MD), AND REPRESENTATIVES TOM COLE (R-OK), ROSA DELAURO (D-CT), CATHY MCMORRIS RODGERS (R-WA), AND PETE SESSIONS (R-TX) — DOWN SYNDROME RESEARCH HAS A NEW HOME AT THE NATIONAL INSTITUTES OF HEALTH AND, FOR THE FIRST TIME IN 20 YEARS, HAS RECEIVED ITS FIRST REAL BOOST IN FUNDING. THE AGENCY’S “INCLUDE” PROJECT SPELLS OUT EXACTLY HOW THESE HARD-EARNED FUNDS WILL BE USED.


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

IN 2003, MICHELLE SIE WHITTEN gave birth to her first child, Sophia, who happens to have Down syndrome. On a mission to understand how to increase lifespan and improve health outcomes and quality of life, Whitten found herself meeting with then-Director of the National Institutes of Health (NIH), Elias Zerhouni, M.D. Dr. Zerhouni informed Whitten that despite being the leading cause of developmental delay in the U.S. and the world, Down syndrome
was one of the least-funded genetic conditions by the NIH, and he gave her an important piece of advice: “If you do just one thing, create an academic home for Down syndrome research … and rebuild the pipeline of science.”

And so started Whitten’s journey establishing the Global Down Syndrome Foundation and the Linda Crnic Institute for Down Syndrome, focused on research and medical care.

“Following that meeting, we started traveling to Washington, D.C. almost every month to educate Congress and the NIH on this issue,” says Whitten, President and CEO of Global.
“We met so many families whose children had health issues, and they helped us with petitions, phone calls, letter writing, and face-to-face meetings. In our very first letter writing campaign, 1,000 people contacted Congress advocating for more Down syndrome research funding. It wasn’t easy, and it would take a decade to succeed, but we made it happen!”

Fortunately, Global was able to attract scientists “brilliant of mind and heart” — Tom Blumenthal, Ph.D., Joaquín Espinosa, Ph.D., and Huntington Potter, Ph.D. Dr. Espinosa, now the Executive Director of the Crnic Institute, has clearly mapped out how people with Down syndrome have a different “disease spectrum” where they are highly predisposed or protected from major diseases that represent 60 percent of all the deaths in the U .S. Most importantly he made a game-changing discovery recasting Down syndrome as an immune system disorder.

Armed with the support of the Down syndrome community and groundbreaking science, the pivotal point for Global came in fall 2017. On Wednesday, Oct. 25, 2017, for the first time in its history, the Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, which provides federal funding for the NIH, held a hearing on current and future research funding priorities for people with Down syndrome. The hearing included testimonies from Global and the Crnic Institute. Global had two goals: to move Down syndrome under a trans-NIH structure, since the condition touches so man y diseases, and to reverse the terrible disparity of funding.

The results were astounding, with the entire committee standing in ovation at the end of the hearing , primarily for the self-advocate testimony by Frank Stephens. The subsequent NIH funding increase was clearly led by Congressional champions: Chairs Rep. Cole and Sen. Blunt and Ranking Members Rep. DeLauro and Sen. Murray, as
well as Reps. McMorris Rodgers, Sessions, Mike Coffman (R-CO), and Cheri Bustos (D -IL).

At Global’s inaugural AcceptAbility Gala in Washington, D.C., Rep. Cole announced the historic and significant $23 million increase in Down syndrome research funding at the NIH from $35 million in fiscal year (FY) 2017 to $58 million in FY2018. A subsequent $98 million has been budgeted for FY2019.
The NIH has embraced the FY2018 Omnibus Appropriations Report and has created a truly trans-NIH effort. Under the office of the Director, Down syndrome research will now be managed by the trans-NIH consortium “INCLUDE” (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). Eighteen NIH institutes and centers comprise the consortium, and the steering committee is led by three great supporters of Down syndrome research: Lawrence Tabak, D.D.S., Ph.D., NIH Principal Deputy Director and INCLUDE Chair; Diana Bianchi, M.D., Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); and Gary Gibbons, M.D., Director of the National Heart, Lung, and Blood Institute.

The FY2018 Omnibus Appropriations Report stated the following: “Down syndrome. The agreement directs the NIH Director to develop a new trans-NIH initiative — involving, at a minimum, NICHD, National Institute on Aging (NIA), and National Cancer Institute (NCI) — to study trisomy 21, with the aim of yielding scientific discoveries to improve the health and neurodevelopment of individuals with Down syndrome and typical individuals at risk for Alzheimer’s disease, cancer, cardiovascular disease, immune system dysregulation, and autism, among others. This initiative shall bring together research results that will be available to academic researchers, nonprofit organizations, and industry researchers. Funding for this trans-NIH initiative will supplement, not supplant, existing NIH funding levels for Down syndrome research.”


Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!

Protected: 2019 PBF Exclusive Screenings

August 1st, 2019 by Global Down Syndrome Foundation

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