Archive for 2019

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.


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

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.”


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

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.”


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

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

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

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

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

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

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

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

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

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

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

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

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

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

About Global Down Syndrome Foundation

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

Global is outraged!

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

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

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

Discrimination and Down syndrome

August 21st, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM Issue 1 2015

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


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

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

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

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

SIGNIFICANT IMPROVEMENT BUT A LONG WAY TO GO

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

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

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

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

MAINSTREAM U.S. SHOWS TRENDING SUPPORT

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

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

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

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

HOPE FOR THE FUTURE

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

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


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

From Down Syndrome WorldTM Issue 3 2018

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


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

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

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

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

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

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

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

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

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


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

Protected: 2019 PBF Exclusive Screenings

August 1st, 2019 by Global Down Syndrome Foundation

This content is password protected. To view it please enter your password below:

2019 Be Beautiful Be Yourself Fashion Show Kick-Off Party

July 30th, 2019 by Global Down Syndrome Foundation

Global Webinar Series – Summer 2019 Recap

July 23rd, 2019 by Global Down Syndrome Foundation

SUMMER 2019

Self-Advocates Win Landmark Federal Funding for Research: Join Global – Join the Movement


What You Need to Know


Overview & Speakers:

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

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

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

Global’s AMAZING progress – science and NIH funding

The Challenges still ahead

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

Michelle Sie Whitten, MA

Michelle Sie Whitten, MA

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

Kevin Brennan

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


Key Takeaways:


Powerpoint Presentation: Click to Download


Questions & Answers:

Howard, a parent in Aachen, Germany:

1. Great news about the NIH funding! But what’s the state-of-play in other countries? How are you advocating for DS overseas to achieve similar success at the global level?

Right now, our advocacy for NIH research funding is solely focused in the U.S. although we are aware of and encourage research support around the world.

Cassie, a parent in Estes Park, CO:

2. How can we stay up-to-date on what is happening in DC concerning Down syndrome funding and research?

Global hosts periodic webinars and provides web and email-based updates to self-advocates, families and friends on our progress in advocating for increases in federal funding for research including sample letters and materials to use in your communications to your Representatives and Senators.

Darcee, a caregiver in Belvidere, IL:

3. What is the best way to get started in trying to get your voice heard as an individual?

There are many ways to get started. Right now you can email your Senators and Representatives and ask them to support increased funding for the INCLUDE Initiative and Down syndrome research as part of the National Institutes of Health Fiscal Year 2020 budget. Additionally you can plan a visit to Washington to meet with your Senators, Representatives and their staff to educate them on Down syndrome and advocate for increased research funding.

Mirela, an organizational member in Tirana, Albania:

4. How Global support the families and people with Down syndrome in increasing their capacity to advocate (training, grants for local advocating organizations, parents network?

Global supports families by hosting trainings and educational opportunities such as our Quarterly Webinar Series, Annual Research and Medical Care Roundtable, and by providing Educational Grants to local Down syndrome organizations around the world to support education, training and advocacy work.

5. Does Global use the influence of the private sector (business) to advocate or allocate funds? Or international funding?

Global meets with many private sector businesses and continues to advocate for people with Down syndrome to further employment opportunities, to include in clinical research trials, to expand access to the entirely differently-abled community etc. We also work with other countries by awarding grants to host educational workshops and help influence private sectors in their specific countries.


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.