Archive for the ‘DSW Magazine’ Category

Born This Way

December 5th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 3 of 4

She Stars in a Three-Time Emmy Award-Winning TV Show and Has Two Businesses- and One Big Message for Everyone.


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!

“DON’T LIMIT ME!” was a battle cry speech that Megan Bomgaars crafted back in 2013 as a high school student in Colorado Springs, Colorado. Fully included herself and part of her state champion cheerleading team, Bomgaars wrote the speech for a school project on inclusive learning. When the video of that speech hit YouTube, Bomgaars suddenly became a viral sensation, which helped catapult her career in television as a key cast member of the three-time Emmy Award-winning TV show, “Born This Way.”

Her perfectly crafted words truly convey Bomgaars’ life philosophy: All people, with or without Down syndrome, can achieve their dreams if they are not limited and have equal opportunity to succeed.

Before her big television break, Bomgaars was invited to numerous speaking engagements and able to spr ead her message of inclusion to audiences all over the world— something she continues to this day. She has presented to nonprofits and corporations in 34 of the 50 states and around the world in countries including Trinidad, Tobago, Spain, Canada, and Mexico. In 2015, Bomgaars represented the Global Down Syndrome Foundation at the White House to attend then-First Lady Michelle Obama’s “Beating the Odds Summit” focused on students attending post-secondary school against the odds. She and Devon Adelman were the first and only students with Down syndrome to attend.

A TV STAR IS BORN

In 2015, Bomgaars was at the National Down Syndrome Congress (NDSC) Annual Convention promoting medical care and research for Global. Producers from A&E were at the convention scouting talent for a reality show idea that would star people with Down syndrome. They attended the workshop at which Bomgaars spoke and recognized her from her “Don’t Limit Me” YouTube video. She pretty much landed the role on the spot.

Much like Bomgaars’ YouTube video, A&E’s “Born This Way” was an unexpected success, not only weathering ratings and five seasons but garnering 16 Emmy nominations, three Emmy Awards, and two Critics’ Choice Awards. The reality series features seven adults with Down syndrome who pursue their passions and lifelong dreams, explore friendships and romantic relationships, and overcome obstacles, while providing a window into the lives of people with the condition.

A special holiday finale episode will air on A&E in December 2019. A digital web series, which will pick up where the fourth season left off, is also in the works.

On the show’s website, Bomgaars is described as a “woman on a mission” who has the “self-imposed mandate to save lives.” When asked about her future after the hit show, she is very clear: “I am an ambitious person, and I have a lot more I want to accomplish for myself and for other people. I’m going to do it all.”

THE NEXT CHAPTER

Bomgaars’ television career allowed her a platform to turn her interests and hobbies into profitable businesses. She began pitching her clothing brand, “Megalogy,” which started as a fun tie-dye project for her friends and family, to retailers around the world. Her persistence and hard work resulted in a partnership with Sanrio’s “Hello Kitty” brand! Bomgaars sells her clothes online at megology.com.

Following her success in the clothing industry, Bomgaars teamed up with ArtPop Cosmetics to develop cosmetics. She hand-selected colors and products for a collection of lipsticks, which she named “Don’t Limit Me.” Moreover, she modeled the makeup in a stylized photoshoot organized by ArtPop Cosmetics to market the brand.

Bomgaars has moved back to Colorado and reconnected with Global. She spoke at Global’s World Down Syndrome Day celebration at the state capitol and at the Grand Opening Ceremony of Global’s new headquarters.

During the summer, Bomgaars was the opening keynote speaker for Global’s “Advocacy Workshop for Families, Science & Society” at the Trisomy 21 Research Society biennial conference in Barcelona, Spain, and the keynote at Global’s Research and Medical Care Roundtable at the NDSC Annual Convention in Pittsburgh, Pennsylvania.

“At Global, we stress the importance of highlighting our self-advocates at every event,” says Michelle Sie Whitten, Global President and CEO. “How can we have conversations about the future of people with Down syndrome if they’re not in the room, contributing to the conversation?”

“Barcelona was really my first event all about science. To be honest, I was nervous and excited,” says Bomgaars.

“We were in a new country with world-renowned scientists and doctors from all over the world, many of whom spoke different languages, and Megan just knocked it out of the park,” says Kris Bomgaars, Megan Bomgaars’ mom.

To top it all off, Bomgaars has started college at the University of Colorado at Colorado Springs to study communications and business.

“Megan is a leader and role model,” says Whitten. “She has incredible poise, timing, and intelligence. She also works very hard to be successful. That is why were are so proud to present her with our 2019 Quincy Jones Exceptional Advocacy Award at Global’s Be Beautiful Be Yourself Fashion Show.”

Clearly, this 26-year old powerhouse is going to do it all.


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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Global Honors Supermodel Amanda Booth with Quincy Jones Exceptional Advocacy Award

November 15th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 3 of 4

What happens when a supermodel has a baby with Down Syndrome? Well, she gets him a modeling contract too (obviously)!.


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!

AMANDA BOOTH TRAVELS the world for her career, modeling in fashion editorials and advertising campaigns for companies and publications such as Italian Vogue, Lancôme, Elle, Target, and more. She also has appeared in network television shows such as “Community,” “Hot in Cleveland,” and “Maron.” Yet, Amanda credits her greatest journey to one that takes place right in her own home: parenting her son, Micah, who happens to have Down syndrome. In 2014, Amanda and her husband, Mike, became first-time parents, with all the same questions and fears new parents typically have, plus one that took them by surprise: What is Down syndrome?

The couple embraced Micah from the beginning, and by the time he was 2 years old, his mom had already secured him a modeling contract as well — an act of a mother ’s love but also an act of advocacy for people with Down syndrome in the modeling industry. “We wanted to show the world how beautiful Down syndrome is,” says Amanda.

“We wanted to show the world how beautiful Down syndr ome is,” says Amanda.

Amanda started to share her inspiring journey of motherhood on her social media accounts @lifewithmicah and @amanda_booth. Micah’s story then spread to magazines and online publications, ranging from feature stories and interviews with journalists to guest blogs and articles written by Amanda herself. The mother and son pair have been featured in Harper’s Bazaar US and Australia, Glamour Magazine UK, Mother’s Magazine, Down Syndrome World, The Mighty, and more. Most recently, in September, they were on the cover of Vogue Living Netherlands, making Micah the first person with Down syndrome to be featured on a Vogue magazine cover.

Amanda has used her modeling for fashion retailer Anthropologie to promote Global as well. As the face of the mega brand’s Mother’s Day campaign, Amanda helped raise thousands of dollars for Global’s research and medical care. This year, Amanda will be awarded Global’s prestigious Quincy Jones Exceptional Advocacy Award at the Be Beautiful Be Yourself Fashion Show, the largest fundraiser for Down syndrome in the world.

A PERSONAL JOURNEY OF LIFE, LOVE & ACTIVISM

Amanda and Mike did not learn that Micah had Down syndrome until he was 4 months old.

“I had never met someone with Down syndr ome before. We had a lot of fears, questions, and concerns about what that meant.”

About three years later, Micah received the dual diagnosis of Down syndrome and autism. “Because we got to know Micah as Micah first, his official diagnosis didn’t feel heavy. Ultimately, it was just words on a piece of paper. He was still our funny, lively boy who we love and care for.”

Mike, who is extremely supportive of Amanda’s advocacy, agrees.”

“We believe that Micah will ha ve a wonderful, full life. But we do need to make sure he has access to ex cellent health care.”

Micah was born with hypothyroidism and a very weak immune system. As a result, his interactions with the outside world were limited, and his growth and development were stunted.

“It wasn’t until Micah’s pediatrician looked beyond the fact that it was typical for kids with Down syndrome to have a weak immune
system and instead addressed Micah’s health in a more adequate way that he started to get better,” Amanda remembers.

After receiving the correct diagnosis and taking proper medications, Micah’s health was thriving.

“It’s not enough to accept that certain things happen as a part of a condition like Down syndrome. The key to our children’s future is understanding why and how we can help them receive excellent medical care.”

Amanda says their advocacy work happened very organically.

“We already had been given this large platform through my career and social media,” says Amanda, whose Instagram accounts have more than 150,000 followers combined. “When we learned that Micah would have Down syndrome, it felt like our purpose to share our journey with the world.”

She and Mike started receiving letters from families asking questions and thanking them.

“It wasn’t until then that we started to realize how much we were actually helping families,” Amanda says. “We remember what it felt like getting the diagnosis, so we shared it all, the beautiful moments and the struggles.”

As Micah’s face became more well known in the social media and Down syndrome communities, organizations and publications began reaching out to feature their family. Amanda started writing for and being featured in parent magazines. So while working hard to be good a mother and a successful model and actress, Amanda took on another big job as an activist.

CONNECTING WITH GLOBAL

“Global really opened our eyes to the disparity in research funding for Down syndrome from our National Institutes of Health,” Amanda explains.

When Micah was still a baby, Amanda and Global’s President and CEO connected by phone and talked for over an hour, bonding immediately over their children. Later that year, Amanda, Mike, and Micah attended Global’s annual Be Beautiful Be Yourself Fashion Show, which Amanda defines as a transformational moment in their journey.

“Micah had just turned 1, and it was still a very scary time for us,” Amanda remembers. “But when we walked into the fashion show, we were surrounded by thousands of people with Down syndrome and their families who were so happy. And we met incredible leaders truly making a difference in our community.”

That year, 1,400 attendees, including Hollywood celebrities such as Hillar y Swank, Queen Latifah, John C. McGinley, and more, came to Denver for the event, raising $2 million. To date, the event has raised over $18 million for Down syndrome.

“For the first time as parents, instead of feeling scared for Micah’s future, Mike and I felt excited and hopeful.”

She realized they could help families on a larger scale, by advocating for research and medical care with Global.

The family now attends the event every year, and Amanda has been a powerful spokesperson for Global, including partnering for multiple years with retailers and influencers for Global’s Mother’s Day campaign. In 2018, Amanda was the face of Global’s Mother’s Day campaign with Anthropologie, and in 2019, she rallied the support of her tribe of mommy bloggers to help Global create a special video to pay tribute to the holiday.

In addition to supporting Global’s work, Amanda has been heavily involved with other nonprofits, such as Ruby’s Rainbow and Changing the Face of Beauty.

WHAT’S NEXT?

“I’m just a mom who loves my son and wants the best life for him,” Amanda states. “I want other people to see my son the way I see him. Every person deserves to feel like they belong.”

Amanda will receive Global’s prestigious Quincy Jones Exceptional Advocacy Award along with co-awardee Megan Bomgaars at the 2019 fashion show in November. After learning of Megan’s accomplishments as an entrepreneur, TV star, and public speaker and seeing her high-fashion makeup line photos, Amanda is very excited to meet Megan and talk about their shared mission of inclusion and equality.

“I want to thank the parents before us who fought hard for our kids. People with Down syndrome are slowly being accepted into society, able to attend public school, have careers, and get married. I want to thank Global for ensuring our federal government prioritizes Down syndrome research funding to improve health outcomes,” Amanda says. “But the best way to thank them is not by saying ‘thank you’ — it’s by supporting their truly transformative, effective advocacy work.”


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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Award-Winning Actor Colin Farrell Goes Above & Beyond for Global

November 3rd, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 3 of 4


Ensuring 2019 Global Ambassador Charlotte Fonfara-LaRose has a ball at the red carpet premiere of Dumbo


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 MARCH 2019,Charlotte Fonfara-LaRose attended the movie premiere of Tim Burton’s live-action remake of the Disney classic Dumbo as Colin Farrell’s guest. Farrell, who plays circus stalwart Holt Farrier in the film, says, “I was so happy to see Charlotte again at the premiere, and I hope to see her again soon!”

Charlotte assures us the feeling was mutual.

“I felt like a celebrity on the red carpet — he totally remembered who I was and gave me a hug!”

Other cast members in attendance included Michael Keaton, Danny DeVito, Eva Green, and Alan Arkin. As for hanging out with other celebrities on the red carpet like Helen Mirren, Charlotte exclaims, “It was so exciting!”

This amazing opportunity stemmed from Farrell’s generous live auction donation at the Global Down Syndrome Foundation’s 10th Anniversary Be Beautiful Be Yourself Fashion Show in 2018, where Charlotte was a model and Farrell was an awardee. This year, Charlotte has been chosen as the 2019 Global Ambassador where she and her family will be honored at Global’s marquee annual fundraiser.

MEET CHARLOTTE FONFARA-LAROSE

The 16-year-old firecracker was named after her maternal grandmother, Charlotte. Charlotte is a natural activist who loves to help people.

“I help anyone feeling sad feel better by giving them a hug,” she says.

Cathy Fonfara and Scott LaRose had Charlotte in 2003. The young new parents did not learn Charlotte would have Down syndrome until she was born, causing quite a shock. However, both Cathy and Scott come from large dedicated families, who rallied in support of their beautiful new addition to the family.

“Her birth made us want to be better people, and we wanted better for her,” says Cathy. “She is really the reason that we have such a great relationship and that we are a loving family together.”

Scott recalls that his father, who was an engineer and probably knew the least about Down syndrome in the whole group, came to them two days after Charlotte’s diagnosis with a binder of information.

“It was a very touching way to approach things, and I think it certainly helped us dig in a little bit,” Scott tells.

Sixteen years later, the family remains close. The Fonfara and LaRose families have a unique arrangement that works well for them and gives Charlotte lots of quality time with her large extended family.

“Scott and I are no longer a couple, but we are a family and we will always be a family,” says Cathy. “We vacation together, we go out to dinner as a family, and we spend every holiday together as a family.”

Charlotte lives full time with her mom and 8- year-old sister, Noelle, in Annapolis, Maryland. Scott is a ver y attentive father who is involved in every aspect of Charlotte’s life. Charlotte also has special relationships with both her grandmothers: Cathy’s mom, whom she calls “Oma,” and Scott’s mom, whom she calls “ Gigi.”

Charlotte is an inspiration to her family and a role model to her little sister, classmates, and peers. She doesn’t let Down syndrome get in the way of pursuing her dreams, and she lives her life as any typical 16-year-old. She loves horseback riding, swimming, paddleboarding, and traveling. In fact, she’s traveled to over 30 states and 10 countries with her family! She has a boyfriend named Zach, whom she has known since childhood, and they love going on sushi dates. Charlotte has dreams of owning a bagel shop one day, marrying Zach, and living in a blue and red home together.

Charlotte has inspired her mom into action.

“Over the years Charlotte has shown me that all she needs is what all children need: love, support, and encouragement,” says Cathy. “She also has helped me to educate doctors, teachers, and school administrators about the ability and potential of people with Down syndrome.”

GLOBAL’S 2019 AMBASSADOR

This year, Charlotte and her family are thrilled to be named an Ambassador family at the 2019 Be Beautiful Be Yourself Fashion Show. The event is the largest fundraiser for Down syndrome in the world. Over 1,400 self-advocates, families, Hollywood and sports celebrities, community philanthropists, and government leaders attend each year.

Charlotte and her family are no strangers the star-studded evening, though. Cathy and Charlotte were introduced to Global when Zach was in Global’s Washington, D.C. Gala in 2013. Charlotte and Zach danced on the runway together during a performance by Sheryl Crow!

“When we attended our first fashion show, we were astounded by the effort, quality, and attention that Global put into providing such a beautiful and festive event to showcase the beauty of individuals with Down syndrome,” says Cathy.

While she is always impressed by the famous and influential people who come out to support the show every year, Cathy is clear.

“The best part is when the models walk the runway, unintentionally stealing the spotlight from those celebrities escorting them,” she says. “The pride and joy on the models’ faces is indescribable and inspiration is palpable.”

Charlotte and her family have now attended seven Global fashion shows.

COLIN FARRELL’S SPONTANEOUS AND IMPROMPTU GENEROSITY

In 2018, at Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show, guests went wild for the 25 models with Down syndrome, including Charlotte. They were also brought to their feet by two inspiring recipients of Global’s Quincy Jones Exceptional Advocacy Award — Zack Gottsagen and Colin Farrell.

Farrell is an award-winning Irish actor and activist. He received his first Golden Globe for In Bruges and was nominated for multiple awards for his performance in The Lobster, starring opposite Rachel Weisz. More recently he has star red in the Harry Potter spin-off prequel, Fantastic Beasts and Where to Find Them, The Killing of a Sacred Deer with Nicole Kidman, Roman J. Israel Esq. with Denzel Washington, and the Disney live-action film Dumbo directed by Tim Burton.

Farrell uses his public platform to support organizations he is passionate about. He serves a celebrity partner for the United Nations’ World Food Programme, was an official spokesperson for the Special Olympics World Games in Shanghai, and supports nonprofits focused on the differently-abled community in tribute to his son, James.

As a father to a son with Angelman syndrome, Farrell has supported the Foundation for Angelman Syndrome Therapeutics for over a decade. He credits his son with making his life more meaningful and fulfilling.

“James’ very existence has changed so much about my life and how I preserve my own life selfishly being a caretaker and having the gift of being a protector and a provider for James, and as someone who loves him endlessly, someone who has watched his growth from infant to child to teenager now and approaching his young manhood,” he says. “James’ strength and bravery, his individuality and yet his commonality are things I’m constantly struck by.

“And, of course, as a result of his existence, it has afforded me the great gift of being involved in the lives of other families who care for a child who is differently-abled,” Farrell continues. “I’ve been touched by and allowed to be close to families who share the struggles of just being a par ent first and foremost but also the extra struggles that can arise from being a parent of a child who is differently-abled. James’ enrichment of my life is beyond measure.”

Indeed, James and his work benefiting the differently-abled brought Farrell to Denver last year to receive Global’s highest honor. During the fashion show’s live auction, Farrell jumped up on stage alongside Jamie Foxx, Jeremy Renner, Von Miller, and John C. McGinley and spontaneously offered a trip to Hollywood and tickets to the premiere of Dumbo. Impressed and moved by Farrell’s generosity, Charlotte and her mom decided to bid on the tickets, and they won!

At the fashion show, Farrell took photos with Charlotte and all the models with Down syndrome, and spoke to reporters on the red carpet.

“Seeing all of the members of the community walking down the runway and seeing how much they were empowered, and how the models and every single person in the audience was enraptured, seeing this as an indelible moment and celebration of their lives, and their brilliance as human beings and spirits both individually and as a community, was extraordinarily enriching and also emboldening to observe,” Farrell says.

“What a class act to not only support Global with his presence at the gala but to also offer an ex citing item to raise more money,” says Cathy. “And then be so down to earth and caring to make my sweet Charlotte feel so special.”

FIGHTING DISCRIMINATION AND OVERCOMING CHALLENGES — A REWARDING LIFE

Thousands of guests travel from all over the world to see Global’s iconic fashion show, where models with Down syndrome rock the runway with their celebrity escorts. The evening gives attendees an opportunity to learn, network, and support Global’s work. Through ticket and table purchases, model sponsorships, silent and live auction bids, and general donations, the proceeds from Global’s Be Beautiful Be Yourself Fashion Show benefit their affiliates’ important work in research and medical care.

“The underlying theme of the fashion show is actually human and civil rights, and our event gets to flip an old, negative paradigm on its head,” says Michelle Sie Whitten, President and CEO of Global. “From very active members of the Global community to people who are completely new to Down syndrome, everyone leaves feeling they are a part of something bigger than themselves.”

Charlotte’s family agrees.

“We’ve faced some heartbreaking discrimination in the education system, with teachers creating restrictive learning environments and blatantly excluding kids with special needs,” says Cathy. “One of the many great things that Global does is helping every individual with Down syndrome with education from academia to life skills. They work with parents and their children on their IEPs (individualized education programs), and they are now developing an education center at their new headquarters to focus on vocational training.”

Global aims to show the world that people of all abilities , like Charlotte and James, should have the opportunity to reach their full potential and live happy, rewarding lives.

“Educating our medical professionals and our community is important,” says Farrell. “Imagine you are told your child may never walk and then you see your child take his or her first steps a couple of weeks short of their fourth birthday like James did. The profundity and the emotional magnitude are overwhelming and must be shared with others to educate how y our child’s future is communicated. So there will be great challenges with your child like any child, but the rewards can be unimaginable and even more magnified.”

WORKING HARD TO CREATE HEALTHY LIVES

Global’s Ambassadors and models help raise awareness and advocate for people with Down syndrome to have equal access to transformative research, lifesaving medical care and other opportunities. And who’s at the top of Global ’s contact list for this? The U.S. government. Down syndrome has been one of the least-funded genetic conditions by the National Institutes of Health (NIH) for nearly 20 years, despite being the leading cause of developmental delay in the U.S. and the world.

Angelman syndrome is also a genetic condition. Farrell says that although he was saddened to learn about this disparity in funding, he wasn’t surprised.

“I think maybe the reason for this is a bittersweet one,” Farrell says. “Because people with Down syndrome are often presented as loving and happy, members outside of the community may think there’s no help needed. And it’s our job to teach others that people with Down syndrome need specialized medical care and research and, frankly, help throughout their lives and raise awareness.”

Farrell is optimistic about the progress in research for various genetic conditions “It’s an exciting time in science, and the future is looking brighter for our children than ever before.”

Over a decade of Global lobbying Congress and collaborating with the NIH has resulted in a tripling of the NIH’s Down syndrome research budget, from $27 million in 2016 to $77 million in 2019.

“Through Global, we have come to understand that people with Down syndrome have a different disease profile and that they need specialized medical care throughout their lives,” says Scott. “I was shocked to learn that there are no updated, evidence-based medical care guidelines for adults with Down syndrome. We are hugely grateful to Global and the experts who are working to create those for Charlotte and our community.”

“Global’s amazing work in advocacy, medical care, research, and government legislation will help my daughter and others with Down syndrome be able to live the lives they want and the lives all parents wish for their children,” says Cathy.

“Global’s work is so important because they help find the best treatments for people with Down syndrome who are sick,” Charlotte adds.

The connections between Down syndrome and cancer research are particularly important to the family. In 2016, Charlotte’s friend Mary Miller was diagnosed with leukemia. Charlotte and Mary, both born with Down syndrome, have been friends since appearing as models in Global’s 2014 Be Beautiful Be Yourself Fashion Show. Motivated by Mary’s fight against leukemia and their desire to fund critical Down syndrome research, Cathy and Scott funded a Basic Science Grant to Joaquín Espinosa, Ph.D., and his team at the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus. Additionally, Charlotte’s grandmother Gigi has cancer, and as always, the family is supporting her every step of the way.

“Charlotte has a heart of gold and is already a champion for others who are sick or who she feels are disadvantaged in some way,” says Cathy. “She was just born that way, and we can’t wait to see what challenging projects and work she will take on going forward.”

“As a parent, Charlotte is my number one priority,” says Scott. “I want to make sure she receives everything she needs to reach her potential. By supporting Global, we have the luxury of not only helping Charlotte, but helping all people with Down syndrome and that’s an amazing feeling.”

Charlotte will be featured at Global’s Be Beautiful Be Yourself Fashion Show on Saturday, Nov. 2. Farrell encourages everyone to support her.

“I would recommend anyone who gets a chance to support Global and the Be Beautiful Be Yourself Fashion Show in Denver try and make the trip. Charlotte and everyone with Down syndrome deserve your attention. The event itself is love, community, harmony, unity, and unbridled hope for our future.”

“Whether she is being poked and prodded for medical tests, being underestimated by teachers at school, or having people staring at her as she walks down the street, Charlotte has always been brave, resolute, and true to herself. She is truly a great role model and Ambassador.”

Charlotte is excited to apply her strength and passion to her new role with Global.

“As Global’s Ambassador, I hope to help other people with Down syndrome be healthier through medical research, to bring attention to Global’s mission, and to bring respect to people with Down syndrome.”


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!

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.


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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.


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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.


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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.


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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.


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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.


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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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