Archive for the ‘DSW Magazine’ Category

Understanding Behavioral Challenges

September 19th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 2 of 4


An important study in the journal of mental health research in intellectual disabilities shows that children with Down syndrome demonstrate increased behavioral issues compared with their typical peers. Early intervention and a development strategy can help.


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 STUDY CONDUCTED by doctors at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado, an affiliate of the Global Down S yndrome Foundation, found that 94% of children with Down syndrome experienced one or more behavioral challenges on a w eekly or even daily basis. These behaviors include wandering off, refusal to follow instructions, aggression, impulsivity, and difficulty transitioning from activity to activity. Behavioral challenges can not only impact a child’ s quality of life but also cause major str esses for parents, teachers, and other caregivers.

In the study, Lina Patel, Psy.D., and her three co-authors, Kristine Wolter-Warmerdam, Noel Leifer, and Francis Hickey, M.D., analyzed current tools for measuring behavior in children with Down syndrome to determine which methods were effective and which could be improved upon. They also surveyed parents to learn about which behaviors were the most common and if any challenges shared a common denominator. The doctors published their results in late 2018.

Children with Down syndrome have many positive behavioral traits, and typical children certainly have negative behavioral issues. However, because of lack of research, behavior issues in children with Down syndrome are less understood. Behavioral challenges can hamper a child’s ability to function independently, perform well in school or other social settings, and even handle everyday tasks, such as bathing and dressing, at home. By understanding what can trigger certain behavioral issues, parents and teachers can better develop strategies to intervene before issues progress.

COMMUNICATION TOOLS: A COMMON DENOMINATOR

A variety of factors may fuel undesirable behaviors, according to Dr. Patel, lead author and D irector of Psychology at the Sie Center.

“I feel like motivation is a key factor,” Dr. Patel says. “It doesn’t mean that children with Down syndrome are unmotivated. It might just mean they are motivated by their own interests versus the task at hand, which then may result in behavioral challenges.”

Dr. Patel and her co-authors wanted to know which behaviors parents of children with Down syndrome found most concerning. They asked parents of 274 children seen at the Sie Center from 2010 to 2015 to fill out a specially designed questionnaire. On the questionnaire, parents were asked to state the frequency with which 16 behavior challenges occurred and their level of concern about each. Parents could also name additional behavioral challenges not listed on the form. The study is one of the largest of its kind and the results were not completely anticipated.

Noncompliance, wandering, sitting down and refusing to move, and aggression were the most common difficult behaviors parents reported. The amount and frequency of challenging behaviors was much higher than previously reported in scientific literature, with nearly 100% of parents noting the existence of challenging behaviors at least weekly.

“The most striking result we found was the frequency of behavioral challenges,” Dr. Patel says. “I think we did capture a wider array of behaviors, resulting in a higher percentage of children experiencing those behaviors. The good news is that many of the behavioral challenges that we assessed can be addressed using behavioral strategies that are informed by neurodevelopment.”

Neurodevelopment is the brain’s development of neurological pathways that influence areas including memory, intellectual functioning, attention, and focus.

The researchers also wanted to determine if any of these behavioral challenges shared a common denominator. They found that the inability of a child to effectively communicate his or her wants and needs was associated with many behavioral challenges.

“Behavior is a form of communication people use when they do not have access to other methods of communication, like verbal communication,” Dr. Patel explains. “Therefore, it’s not surprising that individuals with Down syndrome would have more behavioral challenges if they do not have more functional communication strategies.”

TAKE ACTION EARLY

The longer parents allow unwanted behaviors to persist, the more ingrained these behaviors may become.

“Behavioral interventions can make a difference and really change behavior,” says Elise Sannar, M.D., Assistant Professor of Child and Adolescent Psychiatry at Children’s Hospital Colorado. “If [parents] just live with [a behavior], it’s definitely not going to get better. If kids with Down syndrome learn that if they have a tantrum or refuse to move, they’ll get what they want, that will be reinforced, and they’ll continue to engage in that behavior.”

When concerning behaviors arise, parents should notify their child’s pediatrician or primary care physician as soon as possible so medical causes can be ruled out. Many behavior issues can be triggered by medical ailments to which children with Down syndrome are more predisposed. One such medical ailment is obstructive sleep apnea, which is found in up to 70% of children with Down syndrome.

In addition, parents should pay attention to the context of behavioral challenges — when, where, and with whom they occur, and what happens before and after them, says Anna Esbensen, Ph.D., Associate Professor, Research Director at the Jane and Richard Thomas Center for Down Syndrome in the Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospital Medical Center.

These clues can provide important information about why behaviors occur. Parents who are concerned about a behavior that happened when they weren’t around can ask their child’s friends, teacher, or employer for information about what took place.

“Teaching the child a replacement behavior or a different way of achieving or communicating their needs are helpful ways of teaching an adaptive … method of achieving their desired function,” Dr. Esbensen explains.

She continues, “Once we understand the function of the child’s behaviors, there are evidence-based strategies that can be used to modify that behavioral challenge.”

According to Dr. Sannar, one such strategy is applied behavior analysis (ABA), which uses a variety of techniques, such as positive reinforcement, to increase helpful behaviors and decrease damaging ones. ABA can be effective in children with Down syndrome, autism, and other conditions associated with behavioral challenges.

For example, Dr. Patel says, ABA can be used to stop a child with Down syndrome from running or wandering away from caregivers, also called elopement. A behavioral analyst can collect data to better understand why the child is eloping — is he or she bored, trying to avoid a difficult task that is hard, or eager for attention? Once the analyst has an answer, he or she can create a plan to address it. For example, if the child is avoiding work that feels too hard, the analyst can slowly increase a task’s difficulty or teach the child to ask for a break.

Helping people with Down syndrome manage behaviors is important, not only for their success in school and social situations but also as they enter adulthood, says Dr. Patel.

“Many individuals with Down syndrome who have the skill to seek employment may not be able to if they have behaviors that interfere with their job,” she advises. “It may be more difficult to gain independence with things like staying home alone or even living with others if these behaviors are not addressed.”

While it is more difficult to change longingrained behaviors, therapies and strategies exist that help adults, and studies are starting to address this older population.

The researchers plan to develop a more comprehensive tool to capture the full range of behavioral health challenges that children
with Down syndrome experience. They hope such a tool would help pediatricians and other community providers determine when to refer children to a behavioral health specialist. Most importantly, by understanding and analyzing. these behaviors, they hope to empower both individuals with Down syndrome and their parents to take necessary actions to improve and maintain appropriate behaviors.


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An Out-Of-Sight Connection

September 12th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 2 of 4


Last year, the Global Down Syndrome Foundation’s 10th Anniversary Be Beautiful Be Yourself Fashion Show brought together two very different football fans: Denver Broncos Lineback Von Miller and one of his biggest Admirers, sports-loving 14-year-old Daniel Walshe. The two connected over their love of the game – and fashionable eyewear.


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!

FOR MODELS AND ATTENDEES ALIKE, Global’s annual Be Beautiful Be Yourself Fashion Show is an unforgettable, magical experience. For Global participant Daniel Walshe, the fashion show was a chance to meet one of his longtime heroes, Super Bowl 50 MVP Von Miller. In 2011, Von was drafted by the Broncos as the No. 2 overall draft pick from Texas A&M University. Since then, the seventime Pro Bowl linebacker has posted the most sacks in the NFL. Daniel, a Broncos superfan, owns a Von Miller jersey and even rocks thick black-rimmed glasses because they look like Von’s trademark frames. Von was standing in front of the ballroom entrance when Daniel saw him, and Von greeted him with a big bear hug.

“Von was nice and friendly!” Daniel remembers..

“Both of them looked like they were having such a good time,” says Elaine Walshe, Daniel’s mom. “In fact, Daniel was so excited that a couple weeks later, he convinced us to take him to his first Broncos game to see his new friend in action.”

“I heard great things about Global’s fashion show from some of my current and former teammates that participated, like Peyton Manning and Brandon McManus,” Von says. “I went in not really knowing what to expect but wanted to go and show support for the event. I left being totally impacted by the type of community surrounding Global and the things they do. It was definitely lifechanging for me.”

TACKLING ADVERSITY & CREATING CHANGE

Being the successful athlete and force of nature on the football field that he is, it’s difficult to imagine a guy like Von Miller feeling self-conscious. But when he was a skinny, glasses-wearing fifth grader in Texas, Von didn’t feel destined for a career in professional football. In fact, at first, he had to beg his father to allow him to join a youth football team at the time because his father didn ’t believe he was ready to play. When Von finally began playing, he remembers enduring taunts from other children about his sports glasses.

“I started wearing glasses in second grade,” Von tells. “At first, I’m not going to lie, it was horrible. It wasn’t cool. When I found out I had to wear glasses, I was sad and depressed about it, but over time, I just grew into them, and they became ‘me.’ That’s how I can relate with so many kids who have glasses.”

After establishing himself as a successful professional football player in the NFL, Von was able to turn his childhood insecurities and fears into a way of inspiring children and boosting their confidence.

In 2012, he established Von’s Vision, a philanthropic organization that provides free eye exams and glasses to low-income children in the Denver area. To date, the organization has raised $5.1 million and provided over 8,500 Denver students with free eye care services. Throughout the year, Von’s Vision also funds portable optical exam centers so children in the community can get the eye exams they need.

Von was awarded the 2017 Broncos’ Community Impact Award for his charitable influence. Every spring, the team rallies in support of Von and hosts Von’s Vision Day Celebration at Broncos Stadium at Mile High. Children from identified schools and community organizations are invited to receive free eye screenings and exams. Additionally, participants are given the chance to meet Von.

“There are so many wonderful things we’ve done with the organization,” Von says proudly. “When we created Von’s Vision, I was happy to help one or two kids. To help so many kids and raise so much money for glasses is amazing. I have a wonderful team behind me that has blessed me and allowed me to impact so many lives.”

Up to 50% of people with Down syndrome will need glasses. The most common vision problems include farsightedness, nearsightedness, strabismus (crossed eyes), and astigmatism (blurred vision). Daniel started wearing glasses in kindergarten to address his farsightedness and astigmatism.

Von’s philanthropy work with eyesight and vision issues are very important and relevant to the Down syndrome community, and he understands exactly why.

“For some people with Down syndrome, it’s not that they can’t read, they just can’t see,” Von says. “They have a hard time being able to see words on a paper. That’s my life right there. I’ve always had problems with vision. I know what it feels like to have corrective vision, and I know what type of impact that can have on your life.”

Daniel is a big admirer of Von’s distinctive eyewear.

“When we went shopping for a pair of glasses a couple of years ago, Daniel was thrilled to find a pair of iconic thick black-rimmed glasses that looked like ones he’d seen on Von,” Elaine says.

Thanks to role models like Von, Daniel lets nothing stand in his way. He has faced several health problems, including chronic sinus and thyroid issues and sleep apnea, to which individuals with Down syndrome are predisposed. Daniel has benefited from medical care at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado, a Global affiliate, and knows how to have an active and healthy lifestyle. Daniel continues to pursue activities he loves, including swimming on a local rec team and playing Ultimate Frisbee and basketball on his middle-school team.

ADVOCATES FOR GLOBAL

The Walshe family became part of the Global family in 2010. Daniel met the Global staff and many new friends through medical visits and various Global events and programs.

“Global has been a tremendous support to Daniel, both socially and medically,” says Elaine. “The amount of Down syndrome resources they provide and access to specialists is incredible.”

“When we had Daniel, we were piecemealing together what medical areas were important and which doctors we should go see, just within different moms’ groups,” Elaine continues.

She adds, “Now you can go to the Sie C enter, and they will assess y our child and say, ‘Go see this specialist and that ther apist, and here’s what you need to do.’ It’s a one-stop shop, and they schedule the appointments for us. It’s been a life-changer.”

With access to great health care, Daniel has been able to participate in a variety of
Global’s Dare to Play programs, improving on his skills in soccer, football, dance, tennis, and more.

“It’s been an opportunity to meet other kids who have Down syndrome who have similar
interests,” Elaine says. “Without those programs, he probably wouldn’t have met all the wonderful friends he has.”

Daniel was also a model in Global’s 2014 Be Beautiful Be Yourself Fashion Show,
and the family continues to at tend the event every year. At the 2018 Be Beautiful Be Yourself Fashion Show, Daniel got to witness one of his heroes, Von, escort Global Ambassador DeOndra Dixon, down the runway. With encouragement from Oscar-winner Jamie Foxx, Von even put his gold suit with a blue floral pattern up for live auction. To the audience’s delight, then-Broncos quarterback Case Keenum purchased the jacket. The funds will underwrite important research and medical care for people with Down syndrome.

LOOKING FORWARD TO WHAT’S NEXT

A successful soon-to-be eighth grader who loves football stats and U.S. presidential history, Daniel is already thinking about starting high school. His parents anticipate he will go to college, enter the workforce, and enjoy an independent adult life. And Daniel has an even bigger goal — he wants to become a police officer.

“People with Down syndrome can do pretty much what they have the opportunity to do,” Elaine says.

As for Von, he is full of optimism as he prepares for his ninth NFL season
with the Broncos and a new head coach. He may be focused on the future, but he still reflects fondly on the Be Beautiful Be Yourself Fashion Show, where his life became a little richer.

“There is just so much love [from people with Down syndrome],” Von says. “I gave so many hugs that night. I walk into our facility every day with my teammates, and don’t even hug those guys, but every single person [at the fashion show] gave so much love. It was amazing.”


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Navigating a Dual Diagnosis of Down Syndrome and Autism

September 4th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM Spring 2016


Findig out your child with Down syndrome has co-occuring Austism Spectrum Disorder (DS-ASD) can be daunting, but a better understanding of DS-ASD opens doors to resources and support that benefit children and families alike.


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!

ACCORDING TO THE American Psychiatric Association, ASD is a complex developmental disorder that can cause problems with thinking, feeling, language, and the ability to relate to others. Symptoms occur on a spectrum ranging from mild to severe, and are characterized by challenges in social interaction, verbal and nonverbal communication, and repetitive behaviors.

Current research suggests between 8 and 18 percent of individuals with Down syndrome may also have autism. According to Sarah Hartway, R.N., M.S., President of the Board of Directors of The Down Syndrome-Autism Connection™, an additional 25 percent of people with Down syndrome may exhibit some autism symptoms but not with enough prevalence or severity to be diagnosed with DS-ASD.

“We know autism occurs more frequently in people who have other genetic or chromosomal anomalies,” Hartway said. “So it’s not surprising that people who have Down syndrome are more likely to have autism than the general population.”

SPOTTING THE SIGNS OF AUSTISM

“All children, at any given time, can exhibit behaviors that are consistent with autism, but a child with DS -ASD may engage in them more frequently or find them to be more problematic,” said Robin Zaborek, who also sits on The Down Syndrome-Autism Connection Board of Directors. “Number, frequency, and intensity of behaviors may be distinguishing factors in evaluating for DS-ASD.”

According to Zaborek, children with DS-ASD may engage in the following behaviors:

  • Unusual vocalizations
  • Repetitive motions, such as rocking or clapping
  • Persistent, pronounced need for structure and routine
  • Disinterest in playing with others
  • Inappropriate laughing or crying
  • Repetitive playing with an object, such as a wooden spoon

In some cases, children with DS-ASD may engage in dangerous behavior, such as running away, self-injury, or aggression. They may struggle to reach developmental milestones and have problems with eating, sleeping, and toilet training. They’re also more likely to have certain medical and behavioral conditions, including gastrointestinal issues, seizures, anxiety, and attention-deficit/hyperactivity disorder.

Fortunately, there are resources and ongoing research for people with ASD that will also benefit people with the dual diagnosis. But diagnosing DS-ASD can be a challenge. “Not all medical professionals are aware Down syndrome and autism can co-occur,”

“Not all medical professionals are aware Down syndrome and autism can co-occur,” said Margaret Froehlke, R.N., B.S.N., Secretary of the Board of Directors at The Down Syndrome-Autism Connection. “If families have a Down syndrome clinic in their community, the clinicians there would be better able to make a dual diagnosis because they have the appropriate background.”

Examples of such clinics include the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado and the Thomas Center for Down Syndrome Services at the Cincinnati Children’s Hospital Medical Center.

Beyond such specialty Down syndrome clinics, Froehlke recommends parents visit a facility that belongs to the network of University Centers for Excellence in Developmental Disabilities, listed at aucd.org.

THE BENEFIT OF KNOWING

Parents of children with undiagnosed DS-ASD can feel very isolated, Froehlke said. They may look at how their child interacts with his or her peers with Down syndrome, and when their child isn’t developing in the same ways or at the same pace, they may pull away from their friends in the Down syndrome community.

“For me and many other parents, getting a dual diagnosis actually leads to relief and validation, because now you understand why your child is different,” she said. “You can begin to seek out the treatments, support, and interventions available to you.”

“There is a compassionate community of professionals and families out there who truly understand the DS-ASD journey is different,” Hartway added. “No one has to walk this path alone.”


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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.


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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.”


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Dating and Down Syndrome

July 18th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM Issue 4 2017

Recognizing your child is ready to enter the dating scene isn’t always easy. Noted sexuality educator Terri Couwenhoven helps both children with Down syndrome and their parents navigate these difficult waters.


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!

RELATIONSHIPS GIVE EVERYONE a chance to love and be loved, avoid loneliness and depression, and gain self-esteem — and people with Down syndrome have the same right to these relationships as typical teens and adults.

However, “it’s common for people with Down syndrome to experience oppression, denial, and control over the same sexual aspects of being human that typical adults enjoy in their lives,” said Terri Couwenhoven, M.S., AASECT, Certified Sexuality Educator. “This can lead to a denial of feelings and a reluctance to express themselves.”

That denial can perpetuate the myth that people with Down syndrome are asexual, she said. Parents can, and should, take the lead in helping their children develop the foundations of healthy relationships, and Couwenhoven shared three key tips for parents to approach the subject of dating and relationships.

ATTITUDE MATTERS

Parents need to have a positive attitude toward their teenager’s or adult child’s dating.

“Let’s face it, parents are influential in the dating scene for teens and adults with Down syndrome,” Couwenhoven said. “In addition to making sure their children have active social lives so they have access to potential partners, parents often need to coordinate, help plan, transport, chaperone, and coach — at least initially.”

Parents also serve as role models. Engage in honest and open communication with your own partner, and be attentive to your child’s needs.

OFFER CONCRETE INFORMATION ABOUT THE DATING PROCESS

Look for opportunities to explain dating before your son or daughter is old enough to actually date, Couwenhoven advised. For example, if an older sibling has a partner, explain why people date. Use specific language, such as “they spend time dating to see if they are a good match for each other.” If the couple breaks up, you can explain, “not all relationships work out. It takes time to find the right person.”

When your child gets older and develops a crush on someone who doesn’t return the affection, remind him or her that a romantic relationship can’t start unless both people have feelings for or are interested in each other, she added.

LET THEM PRACTICE DATING SKILLS

“Life experience is the greatest teacher of all,” Couwenhoven said. “Chaperoning is an excellent way for inexperienced newbies to practice the rituals of dating in the context of super vision and coaching.”

As your teenagers and young adults with Down syndrome become more mature and gain self-confidence, chaperoning becomes less necessary.


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Congenital Heart Defects and Down Syndrome:
What Parents Should Know

July 3rd, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM Issue 3 2018

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

CHILDREN WITH DOWN SYNDROME face a high rate of congenital heart defects (CHDs). In fact, about 50 percent of infants with Down syndrome have some form of heart condition, compared with approximately 1 percent of typical infants, although it is unclear why these conditions occur so frequently in children with Down syndrome.
Three of the most common heart conditions seen in children with Down syndrome are atrioventricular septal defect, patent ductus arteriosus, and tetralogy of Fallot.

ATRIOVENTRICULAR SEPTAL DEFECT (AVSD)

AVSD is the most frequently diagnosed congenital heart condition in children with Down syndrome. Various studies place the incidence rate between 30 and 47 percent of CHDs in children with Down syndrome, according to the book Advances in Research on Down Syndrome. A study from the International Journal of Cardiology estimates that AVSD accounts for just 7 percent of CHDs diagnosed in all children. AVSD is characterized by holes between either the upper or lower chambers of the heart, the atria and the ventricles, respectively.
In less severe cases, atrial septal defects (ASD) or ventricular septal defects (VSD) can occur separately. Both are caused by a “hole” in the wall the separates chambers of the heart. ASD affects the top two chambers, while VSD affects the two lower chambers.
AVSD can be diagnosed during pregnancy via ultrasound but may not be evident until a child is a few months to even a few years old. The condition almost always requires surgery, the type of which will vary depending on the kind and degree of AVSD. According to the Society for Thoracic Surgeons, which tracks heart surgery outcomes for all children, AVSD surgeries have a near-100 percent survival rate.


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!

PATENT DUCTUS ARTERIOSUS (PDA)

PDA accounts for 5 to 10 per cent of all CHDs in full -term infants and between 20 to 60 percent of CHDs in pre-term infants. For children with Down syndrome, it accounts for between 5 and 18 percent. This heart defect occurs when a channel called the ductus arteriosus that connects a fetus’ heart and lungs in utero does not close after birth. While it is frequently diagnosed after birth, not all children exhibit symptoms. When symptoms do exist, they include tiredness, sweating, quick or heavy breathing, disinterest in eating, and not gaining weight as expected in a growing child.
Doctors generally employ four treatments for PDA: watchful waiting to see if the ductus arteriosus closes on its own, nonsteroidal anti-inflammatory medications, surgery, or an outpatient procedure called a transcatheter device closure. Most children undergo catheterization, according to the American Heart Association (AHA), but treatments chosen often depend on a child’s age, degree of symptoms, and whether the particular PDA responds to medications. Children with PDAs have a higher rate of mortality than children whose PDAs are closed with treatment, according to the American Academy of Pediatrics.

TETRALOGY OF FALLOT

This heart defect is fairly rare in all children. The CDC estimates that it occurs in only 1 in 2,518 (0.04 percent) of all live births. However, it accounts for 2 to 6 percent of CHDs in infants with Down syndrome.
Infants with this heart defect have four different problems: a ventricular septal defect, a narrow or obstructed pulmonary valve, an enlarged aorta, and a thicker-than-normal right ventricle. The combination reduces blood oxygen levels in the rest of the body.
Tetralogy of Fallot, which is usually diagnosed after birth, requires an open-heart surgery called complete intracardiac repair. As children grow up, they may need additional surgery to widen or replace a pulmonary valve, which can leak and lead to a condition called pulmonary backflow.
Research suggests that 90 percent of all infants who have surgery for tetralogy of Fallot live into their 40s, according to the Cleveland Clinic Journal of Medicine, but these children often face heart problems, such as arrhythmia and coronary heart disease, later in life and require lifelong follow-up care with a cardiologist.

DETECTING PROBLEMS

Certain CHDs can be diagnosed during pregnancy by a pediatric cardiologist through noninvasive testing, such as ultrasound or fetal echocardiogram. Early diagnosis of cardiac issues is crucial to ensure prompt medical response after delivery and to improve an infant’s chances to survive and thrive. In addition, a pediatric cardiologist provides ongoing care throughout childhood.
Given the frequency of CHDs in babies with Down syndrome and the optimal one-year surgical window, the American Academy of Pediatrics recommends every baby born with Down syndrome be evaluated by a pediatric cardiologist within one month of birth. This
recommendation includes children whose prenatal tests and general pediatrician found no trace of CHDs.
Whether a child with a CHD is diagnosed before or after birth, parents should, if possible, interview more than one pediatric cardiologist and cardiovascular surgeon, if necessary.
It’s also wise to ask an insurance provider about coverage for seeking a second opinion before parents decide on a care plan for their infant.

LONG-TERM PROGNOSIS

Until the early 1970s, providers were reluctant to perform heart surgery on children with Down syndrome who had CHDs, essentially predestining them to a lifetime of hear t problems. Research has since established that babies with Down syndrome fare very well after pediatric heart surgery, and delaying surgery beyond the first year of life increases the risk of problems in adulthood.
“It is much easier to find treatment for children with Down syndrome and heart defects than adults with the same condition,” says Dunbar Ivy, M.D., Professor of Pediatrics–Cardiology at the University of Colorado School of Medicine and Selby’s Chair in Pediatric Cardiology at Children’s Hospital Colorado.
Today, fewer providers avoid or delay surgeries to correct CHDs. Thanks to improvements in technology and greater knowledge of the conditions, doctors are better able to treat CHDs early, limiting their impact on a child’s life.
“If surgery is performed early, most children with Down syndrome and a hear t defect will do very well,” Dr. Ivy says.
As a child with Down syndrome and a CHD grows, he or she will need ongoing care from a cardiologist familiar with CHDs, Dr. Ivy added, whether or not the defect was repaired. Not all adult cardiologists are familiar with the unique needs of patients with congenital heart disease, but the Adult Congenital Heart Association provides an online directory at achaheart.org/your-heart/clinic directory that can serve as a starting point for research.


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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.”


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Want to see this film? Click here to buy tickets in select cities. Your ticket purchase will support a national release AND actors with Down syndrome!

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. 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.


Press Release:

Global partners with local Down syndrome organizations to ensure The Peanut Butter Falcon’s opening weekend was so successful that it triggered nationwide distribution! And the list of screens continues to grow!





Read the Reviews:



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


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

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.


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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