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Sen. Roy Blunt, Rep.Cheri Bustos, and Global Ambassador CC Mullen honored at the AcceptAbility Gala in D.C. with a special performance by Multi-Platinum pop artist Andy Grammer

Press Contacts:
Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832

May 29, Denver, CO – It was standing-room-only at the sold-out annual AcceptAbility Gala, benefitting the Global Down Syndrome Foundation (Global) at the Hilton Washington DC National Mall last week. The evening highlighted the National Institutes of Health (NIH) reversing a twenty-year trend and tripling the research budget benefitting people with Down syndrome. The event raised nearly $350,000 for life-saving and life-changing medical care and research.

“We were thrilled when the director of the NIH, Dr. Francis Collins, recently presented an estimate of nearly $80 million for Down syndrome research in FY2019 to the Senate Labor Health and Human Services, Education and Related Agencies Sub-Appropriations Committee,” said Michelle Sie Whitten, Global Down Syndrome Foundation President and CEO. “Dr. Collins is one of our many heroes at the NIH who believes in our science and that the 400,000 American citizens who happen to have Down syndrome are equal under our laws and deserving of so much better. But we still have a long way to go to rebuild the pipeline of Down syndrome research and achieve parity.”

The gala honored Global Ambassador CC Mullen, and recognized Senator Roy Blunt (R-MO) and Representative Cheri Bustos (D-IL) with Global’s Quincy Jones Exceptional Advocacy Award (Q-Award).

Three previous Q-Award winners helped ring in the evening. Congresswoman Cathy McMorris Rodgers (R-WA) provided moving, opening remarks with her 12-year old son who happens to have Down syndrome, Global Ambassador Cole Rodgers, by her side. Congressman Tom Cole (R-OK) and Congresswoman Rosa DeLauro (D-CT) introduced the 2019 honorees, underscoring the great contributions that Sen. Blunt and Rep. Bustos have made to the Down syndrome community and all those who are differently-abled.

Global Ambassador CC Mullen is currently battling leukemia and was unable to attend. CC was represented by her parents, Ed and Erin Mullen. Erin’s speech received two standing ovations. “I am a mom of a child who is ten times more likely to get childhood leukemia, among many other diseases and health challenges. This is just one reason why medical research for individuals with Down syndrome is important,” Erin shared. “To work with Global, our congressional champions, and self-advocates on the first-ever Congressional hearing on Down syndrome research was one of the best experiences of our lives. I got to hold CC in my lap, witness a standing ovation for Frank Stephen’s testimony, and later see the results be the first significant increase in Down syndrome research funding in nearly 20 years. My experience with Michelle and the Global team makes me believe without a doubt that things can change and that we can all make a difference.”

Rep. McMorris Rodgers agreed, “Michelle and I have been on this journey for 12 years now for Cole, Sophia, and millions of people with Down syndrome. Research about Down syndrome has so much to offer not just those with Down syndrome, but the world. Global and Dr. Espinosa at the Crnic Institute are making sure that everyone understands that we can help cure Alzheimer’s, cancer and so many life-threatening diseases if we invest properly in Down syndrome research.”

Reps. DeLauro and Cole emphasized the successful, bi-partisan effort around Down syndrome research and medical care. Global’s Q Awardees Blunt and Bustos provided an insight into the greater framework within which people with Down syndrome can succeed.

“Global and the Crnic Institute, the Mullen family and all those with Down syndrome, everyone in this room tonight, is taking on a worthy cause and battling for what is right. This battle is truly bipartisan. And only by working together can we make sure that every person with Down syndrome has the resources they need to live a happy, productive, and dignified life. That’s our goal,” said Rep. DeLauro.

“Every American has a special and unique role to play in our communities, and those who face challenges deserve an extra dose of support from their communities. Republican or Democrat, this is something we can all agree on,” said Rep. Cole. “During this year’s AcceptAbility Gala, I am proud that my colleagues Senator Roy Blunt and Congresswoman Cheri Bustos were honored for their advocacy on behalf of those Americans in the Down syndrome community. Certainly, this is bipartisan work we can all be proud of.”

“It was a tremendous honor to be a part of this year’s AcceptAbility Gala. In the subcommittee I chair, we have worked together in a bipartisan, bicameral way to boost federal funding for medical research by $9 billion over the past four years,” said Senator Blunt. “I appreciate all that the Global Down Syndrome Foundation does to bring together families, advocates and supporters who are working hard to make sure Down syndrome remains a research priority. An event like this doesn’t just bring awareness, it inspires all of us to make sure differently-abled people are recognized for their achievements and given the opportunity to continue accomplishing great things in their lives.”

“I know a young girl with Down syndrome who was diagnosed with Lyme disease. Clinicians were at a loss as to how to treat her and Dr. Espinosa jumped in to help,” said Rep. Bustos. “We obviously need to understand more about what appropriate care is for people with Down syndrome. We also need to keep pushing important financials vehicles such as the ABLE act. There is so much more we can and should be doing for people with Down syndrome.”

The AcceptAbility Gala was capped off with an inspirational set by The Ransom Notes musical trio from Nashville, and an intimate and heart-felt performance by multi- platinum pop artist, Andy Grammer. The award-winning musician related to the cause immediately and even helped organize two unified dance troupes, RhythmXpress and Devenio, to choreograph dances to his first two certified Gold songs – Good to be Alive and Keep Your Head Up.

Grammer was truly touched by the event, “There are a lot of emotions around this topic, but the real work is getting to DC and getting into the true mechanics of how to create real change. And the Global Down Syndrome foundation is creating real change.”

Chief White House correspondent at Fox News, John Roberts was the gala’s emcee. Honorary Committee members included Representatives Eleanor Holmes Norton (D-DC), Pete Stauber (R-MN), Cathy McMorris Rodgers (R-WA), Michael Bennet (D-CO), Cory Gardner (R-CO), Elizabeth Warren (D-MA), Tom Cole (R-OK), Diana DeGette (D-CO), Rosa DeLauro (D-CT), Barbara Lee (D-CA), and Senators Steve Daines (R- MT) and Roy Blunt (R-MO). Key sponsors include Kroger, American Express, JMA Solutions, MasterCard, PhRMA, US Travel Association, Visa, Wells Fargo, and the Mullen Family.

To learn more about Global’s AcceptAbility Gala and the Quincy Jones Exceptional Advocacy Award, visit: https://www.globaldownsyndrome.org/acceptability-gala/

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).


Left to Right: Michael A. Clemens (President, CU Anschutz Student Senate); Linda Shoemaker (CU Regent, District 2 – Boulder); Michelle Sie Whitten (President & CEO of Global Down Syndrome Foundation); Donald M. Elliman, Jr. (Chancellor, University of Colorado Anschutz Medical Campus); Bruce D. Benson (President of the University of Colorado)

Global President & CEO, Michelle Sie Whitten, was honored to accept the CU Regents Distinguished Service Award at the University of Colorado Anschutz Medical Campus Spring Commencement. Linda Shoemaker presented her award, stating that “Whitten’s tireless pursuit of excellence in care, research, and advocacy has yielded better lives for all, and her commitment to the University of Colorado is today honored by the CU Board of Regents and the CU community with the Distinguished Service Award.”

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What Families Should Know About Moyamoya Disease

May 23rd, 2019 by Global Down Syndrome Foundation


Maria Dellapina and her daughter, Erin Farragher

From Down Syndrome WorldTM Issue 1 2019

This rare disease is significantly more common in children with Down syndrome. Understanding symptoms and early detection could save a life.

“WHAT IS MOYAMOYA DISEASE?” many readers may be asking themselves. It is a rare blood vessel disease caused by blocked arteries in the brain. The name “moyamoya” is derived from a Japanese term meaning “puff of smoke,” because the tangle of vessels often resembles a small puff of smoke. Occurring in approximately 1 out of every 100,000 people, moyamoya disease can be fatal if left undiagnosed and untreated. It is estimated that people with Down syndrome are 26 times more likely to develop the disease, compared with the typical population. It is important for parents of children with Down syndrome to know the warning signs and next steps if their child is diagnosed.

A MOTHER’S STORY


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!

Maria Dellapina, from Burton, Ohio, is the founder of the award-winning adaptive eyewear company, Specs4Us. Her daughter, Erin Farragher, happens to have Down syndrome. When Erin was 16 years old, she began experiencing unusual symptoms of shaking , fainting, and muscle aches.

“Erin called out to me, I turned around, and she was shaking all over and fell to the ground,” recalls Dellapina. Initially, Dellapina thought her daughter had experienced a mini-stroke, but Erin bounced back quickly.

However, Erin’s symptoms continued to occur — more headaches, more muscle aches, and poor balance. In Dellapina’s search for answers, she received an email from a parent, who, based on his experience with his daughter, advised Dellapina to look into moyamoya disease, a term with which she was unfamiliar.

Growing increasingly concerned with Erin’s “off” behavior over the next few days, Dellapina decided to take Erin to the emergency department at a local hospital.

“When I pulled into the parking lot, Erin star ted throwing up,” Dellapina recalls. “The physicians thought Erin had the flu. They even laughed when I mentioned moyamoya.”

Not convinced, Dellapina took Erin to another hospital in Cleveland. A CT scan revealed Erin had suffered from a stroke. In fact, it was just one of several strokes and transient ischemic attacks (TIAs), also called “mini-strokes,” that Erin had apparently experienced throughout her young life. Later, at Cleveland Clinic, an MRI and angiogram led physicians to diagnose Erin with moyamoya disease.

LEARNING ABOUT MOYAMOYA

Anytime families receive an unexpected diagnosis, it can be very overwhelming and scary. Knowing the facts and what to expect can help ease some of that fear. Moyamoya disease occurs when the internal carotid arteries at the front of the neck that supply the brain with oxygenated blood gradually narrow, says Raphael Sacho, M.D., F.R.C.S., Assistant Professor of Neurosurgery at the Medical College of Wisconsin. As those vessels narrow, the two vertebral arteries at the back of the neck compensate by developing small blood vessels called collaterals. This causes a tangling of blood vessels in the brain, restricting blood flow.

“Collaterals take over the function of the internal carotid arteries over time,” Dr. Sacho explains. “That, in itself, can cause problems because the collaterals can be small, thin, and not used to taking so much blood. They can burst and cause bleeding.”

As a result, many people with moyamoya disease experience strokes, just as Erin did. All types of strokes share symptoms such as headaches, seizures, visual disturbances, one-sided weakness, slurred speech, involuntary movements, and cognitive impairment. Some common strokes that occur with people who have moyamoya disease are TIAs, ischemic strokes, and hemorrhagic strokes. TIAs occur when blood flow to the brain is interrupted briefly but then resumes, which is why they are often called “mini-strokes.” Ischemic strokes occur as a result of a blood clot completely blocking an artery that supplies the brain with blood. Hemorrhagic strokes — major brain bleeds — may occur if blood vessels or collaterals burst.

The reason people with or without Down syndrome develop moyamoya disease is unclear.

It’s thought that genetics may play a role, as several mutations to the gene RNF213 are associated with moyamoya disease. Infection or inflammation may also be involved in its development, according to the National Institutes of Health (NIH).


Mary Beth Freckmann and her daughter, Madie Ehlers

PREVALENCE AND THE IMPORTANCE OF EARLY DETECTION

“In the United States, it was thought moyamoya disease occurred in 0.1 per 100,000 people,” says Gary Steinberg, M.D., Ph.D., Chair of Neurosurgery, Director of the Stanford Moyamoya Center, and Founder and Co-Director of the Stanford Stroke Center. “More recent studies have shown the incidence may be 0.5 or closer to 1 per 100,000 because it’s been under-recognized in the U.S.”

While the disease is rare in the general population, people with Down syndrome are 26 times more likely to develop the disease than typical people, according to Dr. Sacho. The reasons for that discrepancy are also unclear, though signs seem to point to genetics. He adds that, in Down syndrome, there’s something about the triplication of chromosome 21 (the defining characteristic of Down syndrome) that predisposes this population to moyamoya disease.

The disease can be more difficult to detect in children with Down syndrome than typical children, which may explain why, on average, children with Down syndrome are diagnosed with moyamoya disease nearly two years later than typical children. According to a 2015 study by researchers at Boston Children’s Hospital, children with Down syndrome are usually diagnosed at age 8.4 versus 6.5 for typical children.

A delayed diagnosis can allow moyamoya disease to progress to a more advanced stage.

Dellapina believes an early diagnosis likely would have made a significant difference for her daughter, who, she now believes, showed signs of TIAs as early as age 11. In 2016, Erin underwent pial synangiosis surgery — the typical treatment for moyamoya disease. The procedure involves surgeons creating new blood vessels to supply the brain. It’s believed these new blood vessels can do the job better and have a lower risk of bursting than the collaterals. Once the new vessels are functional, patients both with and without Down syndrome enjoy a normal life expectancy, Dr. Steinberg says.

“That is why it’s so important to diagnose and treat promptly,” he says.

Unfortunately, strokes and TIAs had already significantly damaged Erin’s brain by the time she had surgery, which did not succeed in ending the strokes and seizures. Now 19, she receives hospice care while Dellapina focuses on giving her the best quality of life possible.

For 25-year-old Madie Ehlers of Wisconsin, treatment has, so far, been successful. Born with Down syndrome, she was diagnosed with moyamoya disease in late 2013 at age 20. Like Erin, Madie experienced fleeting stroke-like symptoms and was initially misdiagnosed. She has had three surgeries since spring 2014 — two on the left side of her brain and one on the right, and her symptoms have disappeared.

Today, Madie is back to being active in her community. She is training to become a certified Zumba instructor and plans to marry her boyfriend next year.

“Madie hasn’t had any symptoms since two weeks after her most recent surgery in October 2018,” says Madie’s mother, Mary Beth Freckmann. “Dr. Sacho [who performed the surgery] really believes this will give her a very long life.”


The Peanut Butter Falcon Co-stars: Shia LaBeouf, Zack Gottsagen, and Dakota Johnson at Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show

This must-see indie film stars Zack Gottsagen, an accomplished actor who happens to have Down syndrome, multi-talented Shia LaBeouf, and award-winning Dakota Johnson. Catch the inside scoop here: the film synopsis and cast, how the directors wrote the film specifically for Zack to star in, Shia and Zack’s brotherly friendship, screenings near you, and MORE! As Executive Director for The Peanut Butter Falcon, Global President & CEO Michelle Sie Whitten was honored to present Zack with the 2018 Quincy Jones Exceptional Advocacy Award alongside his costars at Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show. Below, check out exclusive photos, videos, interviews, and more with the stars at Global’s Fashion Show and at the film’s premiere at the 2019 SXSW Film Festival.

 

Film Synopsis:

The Peanut Butter Falcon is an adventure story set in the world of a modern Mark Twain that begins when Zak (22), a young man with Down syndrome runs away from a nursing home where he lives to chase his dream of becoming a professional wrestler and attending the wrestling school of The Salt Water Redneck. Through circumstances beyond their control Tyler (32), a small time outlaw on the run becomes Zak’s unlikely coach and ally. Together they wind through deltas, elude capture, drink whisky, find God, catch fish, and convince Eleanor (28), a kind nursing home employee with a story of her own to join them on their journey. Written by Lucky Treehouse. Check out The Peanut Butter Falcon on IMDB here.

 

The Cast:


Shia LaBeouf
as Tyler

Dakota Johnson
as Eleanor

Zack Gottsagen
as Zak


John Hawkes
as Duncan

Thomas Haden Church
as The Salt Water Redneck

Bruce Dern
as Carl


Jon Bernthal
as Mark

Yelawolf
as Ratboy

 

The Co-Writers/Directors:


Tyler Nilson & Michael Schwartz at SXSW

 

Videos:

Dakota Johnson introducing her Peanut Butter Falcon co-star as he accepts his Q-Award from Global
Zack Gottsagen accepting his Q-Award at Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show
Shia LaBeouf tells how Zack inspires him at Peanut Butter Falcon Premiere at SXSW Film Festival

 

Down Syndrome WorldTM Features:

 

Additional Press:


Peanut Butter Falcon
Wows Film Critics

Peanut Butter Falcon Wins
SXSW Audience Award

Peanut Butter Falcon is
Acquired by Roadside

2019 Trisomy 21 Research Society Conference in Barcelona, Spain

May 19th, 2019 by Global Down Syndrome Foundation


Saturday, June 8th, 2019
9:00am-12:00pm
CosmoCaixa!
Carrer deIsaac Newton, 26
08022 Barcelona
Tel +34 932 12 60 50

 

PROGRAM FOR FAMILIES: ADVOCACY, AWARENESS, & FUNDRAISING

2016-Roundtable-Image

Through a series of short presentations and Q&A, this session will address important issues for self-advocates, family members, and Down syndrome organizations regarding three areas that are intricately related – advocacy, awareness & fundraising for Down syndrome research. This year Global will be hosting a full morning program featuring 5 expert speakers (including Megan Bomgaars from the Emmy Award-winning series Born This Way), and cover the following topics: The Importance of Down syndrome Research & How Down Syndrome Organizations and Families Can Advocate for Government Funding, Self-Advocates with Down Syndrome Make it Happen!, Scientists with Family Members with Down Syndrome – Things to Consider Before Participating in Research and Engaging the Press, Self-Advocates & Celebrities to Raise Awareness & Funds.

 

Speakers & Presentations

Michelle Sie Whitten, MA

President & CEO, Global Down Syndrome Foundation
Executive Director, Anna and John J. Sie Foundation
Crnic Institute for Down Syndrome Board of Directors
T21RS Chair of Morning Session

The Importance of DS Research & How DS Organizations and Families Can Advocate for Government Funding

Megan Bomgaars

Emmy-award winning Actor, Global Spokesperson, Entrepreneur, Motivational Speaker, Self-Advocate

Self-Advocates with Down Syndrome Make it Happen!

Keith Smith

Crnic Institute Human Trisome Project Program Manager

Katherine Waugh

Crnic Institute Postdoctoral Fellow
Down Syndrome World magazine science contributor

Scientists with Family Members with Down Syndrome – Things to Consider Before Participating in Research

Manuel Velázquez

Vice president of the 2019 T21RS Direction Committee (Board of Directors)
2nd Vice President of DOWN ESPAÑA

Engaging the Press, Self-Advocates & Celebrities to Raise Awareness & Funds


 

T21 Research Society Founding Members:

The Peanut Butter Falcon: A Must-See Indie Film Starring Zack Gottsagen

May 19th, 2019 by Global Down Syndrome Foundation


Featured: Dakota Johnson, Zack Gottsagen, and his mothers, Shelley and Trish, and Shia LaBeouf at Global’s Be Beautiful Be Yourself Fashion Show. Photos: Jared Wilson

From Down Syndrome WorldTM Issue 1 2019

Film wins Audience Award at the prestigious South By Southwest (SXSW) Film Festival, and audiences fall in love with Global Down Syndrome Foundation’s Q-Award winner. The key to the movie’s success? Friendship.

ZACK GOTTSAGEN IS NO STRANGER to the spotlight — in fact, he dances right into it. Last year, Gottsagen received the Global Down Syndrome Foundation Quincy Jones Exceptional Advocacy Award. After giving a powerful acceptance speech, he literally threw off his jacket and unexpectedly danced down the runway, charming a crowd of over 1,400 guests at Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show.

The accomplished actor, who is 33 years old and happens to have Down syndrome, stars alongside Shia LaBeouf and Dakota Johnson in a new feature-length indie film called The Peanut Butter Falcon. Gottsagen’s breakout role and the film were praised by Variety magazine’s review: “… there’s something so guileless and genuine about Zak (qualities that stem directly from the actor playing him) that he manages to win over both his newfound friend and the audience in the same coup.”

The review goes on to focus on the relationship between LaBeouf’s and Gottsagen’s characters. “… Both [their acting] approaches result in a kind of spontaneous unpredictability, making the characters’ choices feel constantly surprising.” Definitely two thumbs-up!

The Peanut Butter Falcon tells the story of a young man with Down syndrome, Zak (Gottsagen), who escapes from the nursing home where he pines to follow his dream of becoming a professional wrestler. Along the way, he meets Tyler (LaBeouf), a troubled traveler with a mysterious past, and Eleanor (Johnson) who is sent from the nursing home with orders to return Zak to the facility. The film also includes award-winning actors Thomas Haden Church, who plays a retired wrestler, and Bruce Dern, Zak’s roommate who helps him escape from the nursing home.

In March, Gottsagen and LaBeouf promoted the film together at the prestigious SXSW Film Festival in Austin, Texas, where The Peanut Butter Falcon won the “Narrative Spotlight” Audience Award.

The filmmakers are hoping to land a distribution deal and release by summer of 2019.

 


The Peanut Butter Falcon crew at the 2019 SXSW Film Festival. Global’s Q-Award winners Colin Farrell and Zack Gottsagen strike a pose with Gottsagen’s moms, Shelley and Trish.

DESTINED TO BE AN ACTOR

Gottsagen was born with an irresistible charm and drive to change the world. Just ask his mom Shelley Gottsagen.

“Zack has this ability to connect with people from all walks of life,” she says. “He has a real compassion and love for people.”

He was also born with the rare vigor and determination necessary to succeed in the entertainment business.

“Zack tells everyone he meets about his passion for acting , which landed him a lead role in a feature film,” she adds.

“I have wanted to be an actor since I was 3 years old,” Zack says. “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.”

It was this charisma and determination that led to Gottsagen being cast as one of the first actors with Down syndrome to star as the lead in a full-length feature film. Co-writers and directors, Tyler Nilson and Michael Schwartz, explained their inspiration to write The Peanut Butter Falcon.

“Zack told Michael and me that we should write a movie for him to star in,” Nilson says. “We thought it was genius!”

Nilson and Schwartz had worked with Gottsagan on other short films at Zeno Mountain Farm, a nonprofit that hosts inclusive camps in Vermont, California, and Florida for people of all abilities . They were taken not only by his acting ability but his uncanny sense of timing and skill at reading others. But how to capture that on screen?

Schwartz continues, “Being friends with Zack for many years, we tried to create the most authentic experience we could for our audience by writing a character that is really tailored to Zack and his strengths.”

Gottsagen’s character in The Peanut Butter Falcon, “Zak,” is consistent with Zack the actor in elements such as his love of wrestling and caring, determined spirit.

The result is truly a must-see movie. Variety likened it to indie great Little Miss Sunshine and blockbuster hit Forrest Gump, calling it “a feel-good niche indie with its priorities in the right place.”

 

GOTTSAGEN, LABEOUF, & JOHNSON ON-SCREEN CHEMISTRY


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!

A huge part of any movie’s success is the on-screen chemistry of its actors. The Peanut Butter Falcon has this in spades because the actors became very close while filming. And they have remained close — supporting each other at award ceremonies and keeping in touch frequently through text messages and phone calls.

The bonding happened remarkably fast. Once Nilson and Schwartz finalized the script, the crew had only 30 days to film on the isolated beaches of Savannah, Georgia. Being together every day for a month and working through late hours of the night, the cast truly became a family. Every morning before they started shooting, Gottsagan would give the team a pep talk.

Gottsagen’s mom, Shelley, recalls, “He would call out certain members of the group and thank them for what they did that day. It really gave everyone that extra boost of confidence and created a sense of community.”

For LaBeouf and Gottsagen, their relationship began before the two ever met.

“I saw a video of Zack and thought it would be incredible to work with him. I fell in love with him before I even met him,” LaBeouf explains.

LaBeouf, Johnson, and Gottsagen would eat lunch together every day during filming. Gottsagen consistently ate only chicken. Johnson even named her rescue cat “Chicken” because she said it would make her think of Gottsagan when she was home. While LaBeouf and Gottsagen would watch wrestling together every Monday and Tuesday, Johnson would get mani/pedis with Gottsagen once a week.

“When I met Zack just before we started filming The Peanut Butter Falcon, I was totally bewildered by his purity of heart,” Johnson explains. “He is extremely intelligent, kind, charming, hilarious, and deeply empathetic. He’s the most loving and embracing person I’ve ever met in my life.”

 

IMPROV GOLD

It was important to the film’s stylistic integrity to keep everything as realistic as possible.

“Zack insisted that he do all of his own stunts,” Shelley recalls. “I couldn’t believe that he jumped off the wooden bridge into the water or that he grabbed a fish with his bare hand! But he wanted it to be real.” She explained how this process wouldn’t have been possible without Nilson and Schwartz’s imaginative vision.

“They allowed Zack to have creative control with his scenes, which really made a difference in bringing his character to life.”

“Often, what Zack and Shia came up with was even better than what was on the page,” Nilson says. “Some of the funniest lines and bits in the film, I have to admit, actually come from Zack’s improv!”

Schwartz adds, “With Zack and Shia, we created a space for them to actually live the scenes.”

LaBeouf confirms how special the interaction was. “When Zack and I met, we would just start riffing with each other [while filming],” he says. “Everywhere it went, we’d wind up with gold. We had really deep conversations that I could only have with Zack.”

Gottsagen agrees. “We practiced our lines, but we were able to make it real, and that’s what it’s all about.”

During red carpet interviews at SXSW, the whole cast and crew spoke to the understanding, patience, and appreciation they developed for people with Down syndrome by working with and learning from Gottsagen.

Schwartz summed it up. “There’s a magic that Zack brings to every scene. With him, he’s not just saying his lines, he’s actually feeling the moment.”

 

AN IMPORTANT ROLE MODEL, AN IMPORTANT FILM

Gottsagen caught Global’s attention when a Global Ambassador, Chase Turner Perry, identified a family connection to a producer of The Peanut Butter Falcon.

“We were actually a little nervous as we can’t support a film, even a great film, if the messaging is counter to our advocacy work,” says Michelle Sie Whitten, President and CEO of Global. “So we organized a screening in Denver last May, and I was blown away by how excellent the film is, how it pulls you in, and how the film makes important societal statements that the Down syndrome community would be proud of.”

After spending a good amount of time with Gottsagen, Whitten and her team made the decision to honor Gottsagen with Global’s 2018 Quincy Jones Exceptional Advocacy Award at their 10th Anniversary Be Beautiful Be Yourself Fashion Show, the largest fundraiser for people with Down syndrome in the world.

“Zack is a role model and inspiration not just for people with Down syndrome, but for all of us,” says Whitten.

To Whitten’s surprise, The Peanut Butter Falcon family immediately rallied, and LaBeouf, Johnson, Nilson, Schwartz, and other crew members descended upon Denver to support Gottsagen. LaBeouf and Johnson both introduced Gottsagen and helped bestow the Global award.

Now Global is part of the family supporting Gottsagen and traveled to Austin to cover him and The Peanut Butter Falcon at SXSW. Johnson was not able to attend but sent her best wishes to Gottsagen via text. LaBeouf and Gottsagen walked the red carpet together, laughing, joking, and posing for photos.
During the screening, the audience laughed and cried. When the credits started to roll, there was a standing ovation. At the end of the Q&A that followed, Gottsagen took the microphone.

“I make Shia’s life better every day,” he told the SXSW audience. LaBeouf laughed and nodded in agreement. The sincere and unique friendship, both on and off the screen, is undeniable.

Support Global with Papa John’s Pizza

May 17th, 2019 by Global Down Syndrome Foundation

Order your pizza at papajohns.com from your closest participating store using promo code “GLOBAL” to get 20% off and support Global!

A potential pathway to normalizing the larger problem of immune system dysregulation


Oliver has had alopecia areata since early childhood. (Left Photo Credit: DigPicPhoto)

Press Contacts:
Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832

May 14, Denver, CO – Researchers and doctors at the Linda Crnic Institute for Down Syndrome (Crnic Institute), the University of Colorado Department of Dermatology, and the Palo Alto Medical Foundation in California have just published the first report of safe and efficacious use of an immune modulatory strategy to treat alopecia areata in individuals with Down syndrome. The drug featured in the publication is called Xeljanz, also known as Tofacitinib, which belongs to a class of drugs known as ‘JAK inhibitors.’

The results in this publication hold promise not only for the treatment of alopecia areata but could possibly hold the key for other autoimmune disorders and ailments found in people with Down syndrome. This research builds upon the Crnic Institute’s groundbreaking discovery that people with Down syndrome have profound immune system dysregulation and autoimmunity associated with chronic activation of a branch of the immune system known as the interferon response.

Alopecia areata is an autoimmune disorder in which the immune system mistakenly attacks the hair follicles, causing hair loss. People with Down syndrome have up to a ten-fold higher risk of developing alopecia areata than the typical population, as well as increased risk of developing many other immune disorders.

The research team studied how the drug Xeljanz impacted two individuals with Down syndrome who have alopecia areata. The scientists discovered a remarkable recovery of hair growth within weeks of beginning treatment, and with no measurable side effects. The study results were published on April 5, 2019 in the Journal of the American Association of Dermatology Case Reports.

“For the past four years, we have been hypothesizing that partially inhibiting the interferon response with specific drugs would have therapeutic benefits for people with Down syndrome, and these two cases clearly support our hypothesis,” said Dr. Espinosa, Executive Director of the Crnic Institute, an affiliate of the Global Down Syndrome Foundation (Global).

Dr. Espinosa and several expert scientists at the Crnic Institute believe that Xeljanz is a drug that could have a wide range of positive effects on a variety of health issues and the overall well-being of people with Down syndrome. Xeljanz is manufactured by Pfizer, Inc. and approved in the United States for use in other immune disorders including rheumatoid arthritis, psoriatic arthritis, and ulcerative colitis. Xeljanz has not yet been approved to treat alopecia areata.

“Clearly, Global and the Crnic Institute are interested in science that will benefit people with Down syndrome today, or at least as soon as possible,” said Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “The work on interferon and the potential benefit is astounding. However, there is still much research to be done before people start prescribing JAK inhibitors. We need organized clinical trials starting specifically for people with Down syndrome and now our job is to raise that initial investment of $3 million.”

Numerous JAK inhibitors are currently being tested in clinical trials for alopecia areata and other immune diseases in typical people. Despite the fact that people with Down syndrome have a
higher risk of developing alopecia areata, exclusion criteria of these clinical trials typically make
it near impossible for a person with Down syndrome to participate.

“The next step is to design and launch a proper clinical trial for JAK inhibitors specifically for people with Down syndrome. This will take a significant amount of resources and effort, as well
as strong participation from self-advocates and their families, but it is clearly the right thing to do
at this time. The fact that people with Down syndrome have been excluded from previous
clinical trials is unacceptable,” Dr. Espinosa said.

Much of the science supported by Global and the Crnic Institute focuses on why people with Down syndrome have a radically different disease spectrum and therefore are highly predisposed to diseases such as Alzheimer’s disease and autoimmune disorders but are also highly protected from diseases such as solid tumor cancers. To learn more about the discovery accelerator for this important research, visit the Crnic Institute Human Trisome Project at www.trisome.org.

About the Linda Crnic Institute for Down Syndrome

The Linda Crnic Institute for Down Syndrome is one of the only academic research centers fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, theAnna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute supports a thriving research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.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).

Join our Dare to Ride Team at the 2019 Courage Classic

April 23rd, 2019 by Global Down Syndrome Foundation


Join the Global Down Syndrome Foundation’s Dare to Ride Team for the 2019 Courage Classic bike tour today! The Courage Classic is a fundraiser for Children’s Hospital Colorado, and the Dare to Ride Team will be designating its funds to the Anna and John J. Sie Center for Down Syndrome at the hospital. Whether you are a recreational biker or a seasoned race pro, the Courage Classic has a course for you! Bike the 10-mile route on Saturday, the 160-mile full route over two days, or select one of the many options in between. All routes start at Copper Mountain Resort, 75 miles west of Denver in beautiful Summit County.

The details: spend July 20th & 21st in Copper Mountain!

For all race logistics, click here to visit the Courage Classic site.

Why should YOU ride with Global?

Here are some of the many perks of becoming a Global Rider:

  • Support Life-Saving Medical Care. Raise $50k to benefit the Sie Center for Down Syndrome, which is the fastest growing medical care center for individuals with Down syndrome.
  • Online Fundraising and Communication Tools. With Global, you’ll receive your own personal fundraising page that you can customize and share. Donors can show their support by making a gift online or by mailing a check.
  • Sense of Community. Any skill level is welcome to join! Routes range from
    a 10-mile family ride to a tougher 84-mile route, but group training rides will prepare you to tackle it all!
  • Supportive Staff. Our team is commited to supporting your fundraising goals, so don’t let the $500 minimum deter you. We will host meetings to check in and brainstorm ideas..
  • Team Swag & Celebration Party. For a low registration fee of $100 (before May 1st),
    you will provide life-saving and life-changing medical care to children with Down syndrome.
  • Get Started Changing Lives. Because there’s nothing like cool gear and a cold beer to make that last minute mile seem just a little less impossible.

Ready to sign up? It’s as easy as 1, 2, 3…

1. Register on the Dare to Ride Team page to ensure that all funds raised support the Sie Center.

2. Set up your personal fundraising page. After you register, you can set up your own personal fundraising page, complete with a photo, a personal message and more!

3. Wait for an email from Global. A Global staff member will reach out to you with information about the child you are riding for, and invitation to join our private team Facebook group and a fundraising toolkit to help you get started.

If you have any questions, please contact events@globaldownsyndrome.org or 720-548-5619.

Together we can reach our Dare to Ride Team goal of raising $50,000!

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Corporate Sponsors

Global Webinar Series – Spring 2018 Recap

April 2nd, 2019 by Global Down Syndrome Foundation

SPRING 2019

Take A Deep Breath: Lung Infection &
Cognition in Down Syndrome


What You Need to Know


Overview & Speakers:

This webinar discusses the connection between lung infection and cognition in Down syndrome. Find out what families need to know and important new research that can benefit your loved ones with Down syndrome. Key takeaways from this presentation:

  • How Trisomy 21 leads to respiratory and autoimmune diseases
  • How infectious lung disease likely impacts cognition
  • New research on lung disease, autoimmunity, and Down syndrome that could greatly impact quality of life and help people with and without Down syndrome that face these conditions
Michael Yeager, PhD

Michael Yeager, PhD.

Michael Yeager, PhD. is an Associate Professor in Pediatrics and Bioengineering at the University of Colorado. He earned his Ph.D. at CU in Experimental Pathology and completed post-doctoral fellowships at Johns Hopkins Medical Institutes and National Jewish Hospital. His primary research interests have focused on inflammation and fibrosis of the lung vasculature and the right ventricle in children and adults with pulmonary hypertension and idiopathic pulmonary fibrosis. Recently, he has been investigating why persons with Down syndrome are more susceptible to infectious lung disease. He is grateful to be funded to do this work by the Linda Crnic Institute for Down Syndrome, the American Heart Association, and the Jerome Lejeune Foundation.


Overview:


Powerpoint Presentation: Click to Download


Questions & Answers: Coming Soon!


 

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.