GLOBAL Receives AADMD “Local Hero” Award
May 5th, 2023 by Colleen Rankin
The Global Down Syndrome Foundation is attending and presenting at the 21st annual American Academy of Developmental Medicine & Dentistry (AADMD) One Voice Conference, May 4-7, at the Westin Denver International Airport
Today, May 5, 2023, GLOBAL and self-advocate Taylor Shelsta will graciously accept the AADMD “Local Hero” award recognizing the outstanding work and dedication to inclusive health exhibited in the groundbreaking Medical Care Guidelines for Adults with Down Syndrome (GLOBAL Adult Guideline). The GLOBAL Adult Guideline provides first-in-kind, evidence-based medical recommendations to support clinicians in their care of adults with Down syndrome. An accessible family-friendly version for non-medical professionals is available for free download on the GLOBAL website.
“GLOBAL is honored to receive AADMD’s Local Hero award,” says Bryn Gelaro. “Dr. Tyler and many other AADMD members were a pivotal resource for us when creating the GLOBAL Medical Care Guidelines for Adults with Down Syndrome. Together, we are taking steps towards making healthcare a more inclusive place for adults with Down syndrome.”
GLOBAL Research & Medical Care senior director Bryn Gelaro was joined by the AADMD president and GLOBAL Guideline author, Dr. Carl Tyler, the medical director for Denver Health and GLOBAL Adult Down Syndrome Pilot Clinic, Dr. Barry Martin, and GLOBAL self-advocate, Connor Long, to present GLOBAL’s Adult Guideline. The panel titled “Show Me the Evidence! Newest Health Care Guidelines for Adults with Down syndrome” took place today from 1:40 PM to 2:40 PM MST.
The 2023 AADMD One Voice Conference is centered around navigating uncertainty and preparing for inclusive care in any circumstance. The four-day conference had various panels and breakout sessions discussing how to prepare for, pivot and pilot inclusive health.
GLOBAL is honored to be partnering with AADMD on various projects that will help medical professionals, self-advocates and families access valuable resources that will inform quality medical care practices for people with Down syndrome.
Strength, Stability, Balance, Endurance
January 31st, 2023 by Shaqaula Habinsky
Physical therapists share preventative PT techniques for people with Down syndrome
From Down Syndrome World Issue 3, 2021
“Often times people think of physical therapy (PT) as a place to recover from an injury, like learning to walk after a broken leg. Physical therapy is unique in that we can help when things are hurting, but also provide targeted interventions with the purpose of prevention,” says physical therapist Dr. Sarah Mann, PT, DPT, MBA, NSCA-CPT, founder and CEO of Mann Method PT and Fitness, PLLC and Mann Therapies. “With PT, we encourage listening to the body and taking early action to create healthy and sustainable habits that, over time, can reduce potential problems in the future.”
People with Down syndrome have a unique physiology that impacts their musculoskeletal and cardiovascular systems. Characteristics such as low resting muscle tone, flat feet, joint instability, and low cardiovascular endurance can cause problems like obesity, joint pain, and fatigue. PT addresses physical issues at their root level, first building on the underlying foundational motor skills and then honing those skills to strengthen specific areas of the body. Results include healthier weight management, increased strength, improved balance, increased bone density, improved bowel movements, decreased rates of arthritis and osteoporosis, and ultimately lower levels of pain and fatigue. In turn, this leads to increased motivation for physical activity, improved social functioning with peers, and overall sense of well-being.
Down syndrome physical therapy experts Dr. Sarah Mann, Dr. Patricia Shimanek, and Dr. Kia Mattison share their PT strategies and techniques to address common physical issues experienced by individuals with Down syndrome.
Strength, Stability, Balance, Endurance
“Movement should be purposeful,” says Dr. Mann, who emphasizes four key training areas in her PT method: Strength, Stability, Balance, and Endurance. “After working with hundreds of individuals with Down syndrome and learning how they often respond to various exercises, I find that exercise programs combining these four categories are the most effective in addressing impairments and helping prevent future complications.”
Her physical therapy program, called the Mann Method™, combines foundational movements, hip strengthening, vestibular, and cardiovascular training to focus on multi-joint movements that activate the feet, knees, hips, trunk, and core. Foundational exercises like squats help build muscle and improve function, while balance exercises like lateral tilts help improve weight shift for walking. Progressive sequencing through these various exercises helps build cardiovascular endurance.
“Repetition is a great way to ingrain certain movements into muscle memory,” says Dr. Patricia Shimanek, PT, DPT, an orthopedist at Advocate Aurora General Hospital and mother to a 25-year-old son with Down syndrome. “When my son does push-ups, for example, sometimes he will arch his back too much or hyperextend his elbows. The more he practices the correct form, the better he is able to recognize when and how he needs to move his body to get there.”
Start with the Feet!
Before attending your first PT session, the experts advise to first check your feet! 91% percent of people with Down syndrome have a flat-foot position, which can cause painful misalignments, bad posture, joint pain, and poor proprioception (awareness of body position and movement).
“A reason a lot of adolescents complain of knee pain may be because they’re wearing the wrong footwear. When your foot hits the ground, if it’s not contacting the ground appropriately, it changes the mechanics all the way up effecting the knee, hips, back, and neck,” says Dr. Shimanek. “A quick change in shoes can make a world of difference, helping them to stand up a bit taller, keep their head up, and improve musculoskeletal strength.”
There are many orthotic support options that can be added to your shoes, such as cushion insoles, custom arch supports, and more. If shoe supports do not provide enough stability, PTs can also evaluate for higher level orthotic needs.
Techniques
“Consistency is hugely important to a successful PT program,” says Dr. Kia Mattison, PT, DPT, Director of Physical Therapy at Cobblestone Therapy Group in Roswell, Georgia. “With children, it helps to develop a reward system that encourages this, such as a couple of PT exercises means a couple minutes of playtime. The PT should also collaborate with the patient’s full care team to ensure routines are being practiced and reinforced in various settings.”
Dr. Mattison also advises taking things slow. “Take things one step at a time to allow the individual to gain a mastery of one step before moving onto the next one,” she says. “However, progress takes time and can build slowly over several weeks or months. Make sure to celebrate all the milestones big and small!”
Drs. Mann, Shimanek, and Mattison agree that physical therapy is a lifetime investment. It is not meant to be a temporary intervention that fixes a problem, but instead a training process that builds skills and improves functioning over time.
GET MOVING!
See below exercise modules from GLOBAL’s Webinar with Dr. Sarah Mann “Strength, Stability, Balance, and Endurance – Purposeful PT for Teens and Adults with Down Syndrome.”
To learn more, visit…
Mann Method PT: www.mannmethodpdt.com
Cobblestone Therapy Group: cobblestonetherapy.com/physical-therapist
GLOBAL’s PT Webinar with Sarah Mann: globaldownsyndrome.org/global-webinar-series-spring-2021
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!
Going for Gold: Elana Meyers Taylor & Nico Taylor
January 10th, 2023 by Shaqaula Habinsky
From Down Syndrome World Issue 3, 2022
ELANA MEYERS TAYLOR, has collected numerous inspiring accolades throughout her life. She is perhaps most known for making history in the 2022 Beijing Olympics, receiving her fifth medal (she has three silver and two bronze) in bobsledding. Taylor is the most decorated black Olympic winter sports athlete and the most decorated U.S. Olympic bobsledder of all time. This is an impressive feat for anyone to accomplish, and Elana did it all while raising her beautiful son, Nico, who has Down syndrome.
Like most children, Elana had big dreams for her future at a young age. Since seeing the 1996 Summer Olympic Games in her hometown of Atlanta, Georgia, she knew she wanted to be the one standing on the podium one day. A renaissance athlete, she participated in sports throughout her childhood and well into adulthood. As a kid, she played softball, basketball, track & field, and soccer, all with the intention of becoming an Olympic athlete one day. She went on to play collegiate softball at George Washington University and played professionally after college as well. With all this work building toward her dream of becoming an Olympian, Elana felt immense pressure during her tryout for the US Olympic Softball team. “I put the weight of the world on me and just completely choked.” Taylor stated, “I just couldn’t handle the pressure and thought it was going to be my only chance to live my dream.” This setback allowed her to set her sights on a new sport to carry her to the Olympics.
Taylor’s parents, Eddie and Janet Meyers, suggested she check out bobsledding as an option, and even though she knew nothing about the sport, she decided to give it a shot. Her natural athleticism propelled her through the first round of trials where she could then hone her technical skills to make her a strong competitor in bobsledding. After competing in the U.S. National Team trials and World Cup tour, she qualified to race in the World Championship race within her first year as a brakeman.
Her triumph in the World Championship races as a brakeman allowed her to start racing in the front seat as a driver, and from there she began her legacy as a bobsled icon, making her debut on the U.S. bobsled team at the 2010 Vancouver Olympics. She has continued to compete in the two-woman and Monobob races at the Olympic level, and even qualified to race on the men’s four-man bobsled team!
Elana’s story of success in making her way to the Olympics and earning such honorable titles along the way is admirable on its own, but her work does not stop there. Elana is a devoted advocate for women of color competing in the Olympics and uses her 5-medal status to get her foot in the door and initiate change at a higher level. “Other people like to scream and shout and, you know, take to social media and stuff like that. That’s not really my cup of tea.” She prefers to do her work behind the scenes by having these difficult conversations about equity for women of color in sports with the higher-ups in the Olympic committees, pushing for that positive change. It is clear, that Elana has a passion for advocacy and creating space for marginalized groups to excel, and this passion grew even stronger with the birth of her first son, Nico.
Becoming a Mother and an Olympic Athlete
Amid the rise of her Olympic career, Taylor and her husband, fellow Team USA bobsledder Nicholas Taylor, became pregnant with their first child, Nico, who was born at the start of the COVID-19 pandemic in 2020. Following her silver medal-winning run at the 2018 Winter Olympic Games in Pyeongchang, Taylor was unsure if she wanted to compete in another Olympics. She was already a 3-time medal winner and was feeling content with the progress she has already made in her bobsled career. “You can only be driven so much by a gold medal,” stated Taylor. However, the news of her pregnancy sparked a new kind of motivation in Taylor that she did not quite expect. Competing at the Olympic level while navigating pregnancy and becoming a first-time parent was a new challenge that she was determined to take on.
Elana and her husband continued training throughout her pregnancy, adapting a garage in their apartment building into a home gym to get their training schedule back on track. Less than 6 months after Nico was born, Elana was already working towards making the U.S. National Team and eventually competing in the 2022 Winter Olympics. Nico was along for the ride every step of the way, traveling to Lake Placid with his mother to train and cheering her on from the sidelines at competitions across the globe.
Wherever Elana was, Nico went too. She wanted to show the world that just because she is now a mother, let alone a mother of a child who is differently-abled, she is still a force to be reckoned with in her sport. Her new-found motivation from her son and desire to prove to the world that motherhood does not have to thwart a lifetime of progress drove her to the 2022 Winter Olympics in Beijing, where she earned a silver medal in the women’s Monobob event and bronze in the women’s 2-person bobsled. Now, as a 5-time medalist in bobsledding, her goal is to use her status to uplift and advocate for other women in sports—especially women of color—to fight for equality and serve as a beacon of hope that change is possible.
Taylor’s Experience Raising a Child with Down Syndrome
For most people, having a child at the start of a global pandemic, receiving the Down syndrome and significant hearing loss diagnoses, and a tiresome, eight-day extended stay in the NICU, would be overwhelming. But Elana and Nicholas Taylor did not falter for a second. The Taylors’ athlete mindset helped them make a plan of action to provide Nico the best care possible while still being able to train for and compete in the upcoming 2022 Olympics.
Taylor brings Nico along with her to all her events to show that children with Down syndrome can live normal, happy lives, and more importantly, be an example to her son that you can go out and achieve your goals regardless of what the world is telling you. “We were like, okay, now the rest of the world’s going to tell him he can’t achieve stuff,” Taylor stated. “The rest of the world’s going to tell him ‘No’. Just like they tell female athletes ‘No’. Or they tell moms ‘No, you can’t achieve certain things and you can’t do certain things.’ I want to be there for him and make sure he knows the opposite is true.” Taylor never let skepticism steer her away from accomplishing her goals, and now hopes to pass on that unwavering mindset to Nico.
Many people formulate incorrect assumptions about individuals with Down syndrome based on outdated stereotypes. Due to advances in research, medical care, and inclusion, an increasing number of adults with Down syndrome in the U.S. are going taking post-secondary classes or going to college, getting jobs, playing sports, working, getting married and living semi-independent or independent lives.
As a mother, Taylor hopes that her son can see the obstacles she has overcome in her career to inspire him to chase his dreams without hesitation. “If I could advocate for anything to the world, it is to show that our kids have worth, that they can be important and valuable members of our society, and that the people with Down syndrome in our lives should have the same respect and opportunities as anyone else.”
Taylor’s Advice to Families of Individuals with Down Syndrome: “You Are Much Stronger Than You Think”
Parents of children with Down syndrome have some extra hurdles to navigate throughout their child’s life, but these are not infeasible challenges. Therapy, doctor visits, and assisting with daily living tasks can be daunting responsibilities but are not unmanageable compared to the needs of a typical child. Taylor encourages families who either currently have or are about to welcome a child with Down syndrome into their lives to look past the negativity that is so often thrown at them from the outside world and to know that living with a person with Down syndrome is a gift in itself. “I think all of us have that ability inside of us,” Taylor mentions, “just most of us don’t realize we do”.
Taylor and her husband go above and beyond to provide the best for Nico, and when faced with challenges that seem impossible or overwhelming, they are reminded that Nico is a child like any other, and their job as parents is to simply love and support him unconditionally. “Just trust your own abilities and know that you are much stronger than you think.” The Taylors’ unwavering love for Nico has helped them face these new circumstances head-on and accept that while their situation is not a typical one, they can still achieve their goals as a family. Much like Taylor’s unexpected path to the Olympics—averting her original plans of playing softball and taking on a completely new sport—her experience raising Nico has brought her and her family more gratification and joy than they ever could have imagined.
Advocating for a Brighter Future for those with Down Syndrome
Great strides have been made to reverse the harmful, outdated assumptions about people with Down syndrome in society, but there is still a lot of work to do. Many health and medical concerns associated with Down syndrome still do not have adequate research and funding dedicated to them. At GLOBAL, the mission is to significantly improve the lives of people with Down syndrome through research, medical care, education, and advocacy. In 2021, Elana Myers Taylor attended the GLOBAL AcceptAbility Gala in Washington DC and inspired the audience with her work on inclusion and with her powerful speech made with Nico in her arms.
She is clearly someone who leads by example and works to open doors for individuals who are differently-abled in their communities. At the event Taylor announced that she was proud to be an official GLOBAL International Spokesperson joining the ranks of Quincy Jones, Jamie Foxx, John C. McGinley, Frank Stephens, Kyra Phillips, Beverly Johnson, and Amanda Booth. As an International Spokesperson and member of GLOBAL’s Champion Advisory Board, Taylor will work every year to advocate in Washington, DC, her hometown of Atlanta, and around the world.
“I’m so honored and excited to be part of an organization that in a very short time has succeeded in advocating for increased federal Down syndrome research funds,” Taylor says. “We need to have both sides of the aisle advocating for our kids and to come up with a plan to address lifespan and health disparities for black people with Down syndrome as well. Our kids deserve equity, respect, inclusion, and the right to live safe, happy and productive lives.”
Clearly the Down syndrome community has a formidable ally and a new leader in Taylor who understands how to work hard and create real change.
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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Collettey’s Cookies: The Taste of Sweet Success
October 28th, 2022 by Global Down Syndrome Foundation
From Down Syndrome WorldTM 2022 Issue 2 of 4, written by Emmy Award winner Hanna Atkinson
The Taste of Sweet Success
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! What does success look like?
Let me introduce Collette Divitto, the talented chef and owner of the business she named after her skills, Collettey’s Cookies. Ironically, her idea for the business came after many job interviews and rejection letters. “I was tired of waiting on someone else to make my dreams happen, so I decided I’d make them happen for myself,” says the outstanding 31-year-old entrepreneur.
Collette has always loved baking. In fact, she started creating her masterpieces at the young age of four. Through the years, she tweaked the recipes based on her family’s feedback until eventually she had it down to a science. As her cookies were gaining popularity amongst friends and family, Collette decided to try to sell them for the first time.
When she was in high school, Collette would bake healthy breakfast cookies and sell them in front of local gyms and stores. Her after school gig was small, but successful. “I’ve always been a hard worker, but when I was making my own money working hard, that felt really cool. I wanted to explore that more,” says Collette, who then closed down her cookie business in pursuit of college. She completed a 3-year program at Clemson University with a concentration on food and nutrition. While studying what she’s passionate about, she made sure to make time for all the other excitement that college life had to offer including making new friends, shopping, enjoying apartment life, and going to sports games and concerts, job responsibilities and bills. Collette’s college experience empowered her to feel confident in her independence – she was managing her own school and work schedule, paying her own bills, living on her own, and not relying on her parents.
Eager to apply her expanded culinary knowledge, Collette was disappointed when the traditional post-college job market did not reward her talents and experience with a great job. With the support of her mother, Rosemary, Collette started her own business, Collettey’s Cookies.
“I told Collette that because she’s an adult now, this business venture would need to be more sophisticated than her high school gig,” says Rosemary. “It was important for Collette to learn the whole business ownership process ,including registering the business, doing invoices, and lining up suppliers. She did a great job compiling research and figuring out everything that needed to be done.” And no, Rosemary did not need to teach Collette how to bake – that one is Collette’s specialty!
Running the Kitchen
As a business owner, Collette has a really busy schedule. She runs team meetings daily, where she outlines the team production goals and discusses each employee’s responsibilities. Collette is an expert at cookie preparation; her method ensures every batch of cookies turn out perfectly every time. Collette is passionate about providing thorough training to her employees and she loves giving cooking demonstrations. But the crew makes sure to have fun too! There’s a lot of laughing and smiling happening in the kitchen as they work.”
“I try to create a work environment that helps employees succeed. I encourage them to work hard and be happy.”
A key ingredient of Collette’s managerial style is providing strong support for her team. She is proud that her business hires people with special abilities and promotes the positivity of inclusion. Collette fights for these ideas, including traveling to Washington, D.C. to participate in government advocacy for fair employment policies like proper wages.
Collette welcomes her peers to join with her and encourages them to develop their personal skills. She developed Collettey’s Leadership Program that offers educational workshops on topics ranging from success in school to becoming an entrepreneur.
“Collete is a strong leader because she shares her real experiences with failure and success in hopes that her lessons will help others learn and grow,” says Rosemary. “It’s awesome to watch how people take notice when she begins to talk. They trust her insight, knowing her intentions are good and that she is seeking everyone’s best interest.”
Collette writes about her personal and professional struggles and how she dealt with them in her new book, “Collette in Kindergarten” which recently hit the shelves. The book is the first for an intended series of books that provide her unique perception growing up as a person with Down syndrome. Collette hopes each book will be helpful and positive. Her skills and determination were noticed and are spotlighted in the docuseries called “Born for Business” streaming on Peacock and CRAVE.
Despite Collette’s incredibly packed work schedule, she tries to make time for other hobbies she enjoys like travelling, swimming, tennis, watching movies and sports and evenings out with friends. Collette prioritizes time with family including her sister, Blake Ashley, and her brother, Steele. Rosemary says that they are a close-knit family and are very proud of Collette. When asked what Collette’s greatest strength is, Rosemary quickly said “confidence.”
To which Collette responded with this powerful statement: “No matter who you are, you can make a difference in the world.” Collette is a visionary using her success to impact lives. Now that is truly sweet success.
To learn more about this organization, visit https://colletteys.com/
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 Grants.
Register today at downsyndromeworld.org!
Researcher Profile: Keith Smith
December 27th, 2021 by admin
Since childhood, Keith Smith has been curious about how “life” works, including why people are born different or get sick with diseases like cancer or Alzheimer’s.
Today, as the Laboratory Sciences Program Manager at the Linda Crnic Institute for Down Syndrome, Keith gets to feed his curiosity by overseeing the day-to-day operations of Dr. Joaquín Espinosa’s clinical research on medical conditions that co-occur with Down syndrome. This includes the management of the game-changing, GLOBAL funded, Crnic Institute Human Trisome ProjectTM (HTP).
The HTP is one of the world’s largest studies aimed at understanding co-occurring diseases and conditions in people with Down syndrome and is made up of thousands of donated biological samples. Keith manages these samples and HTP Biobank collaborations with over 30 research teams across the University of Colorado school systems and around the world.
Keith’s career in Down syndrome research is motivated by a personal connection. His older brother, Randy, 39, happens to have Down syndrome and has had a profound impact on Keith’s life in more ways than one.
“The work that I do at the Crnic Institute is rooted in love and is near and dear to my heart,” says Keith. “Randy has inspired me to be humble, kind, patient and resilient…When I need motivation, I think about Randy to remind myself to not take anything for granted and take full advantage of all opportunities.”
The HTP is proving to be a powerful discovery accelerator as the Crnic Institute team looks at biological samples and asks questions like – do the 60+% of people with Down syndrome who have sleep apnea also all have some other condition? Or are they all seemingly protected from some other condition?
Using data from the HTP, in 2016 the Crnic Institute published its groundbreaking study that showed Down syndrome can be categorized as an immune system disorder based on overproduction of the interferon immune system response.
Keith’s wife, Kate Waugh, PhD, is an immunologist and a researcher at the Crnic Institute who is also making important contributions to this body of work. It is having a deep impact on not only on the Crnic Institute research, but on dozens of labs across the world focusing on how to improve the lives of people with Down syndrome based on this important discovery. Kate’s dedication is deeply rooted in her relationship with Keith and Randy. She half jokes that she fell in love with Randy first and then warmed up to Keith.
“I have my best friend everyday ‘in the trenches,’” says Keith. “We’re able to somewhat disconnect when we are away from the lab, having two little girls at home – Lillian and Anna – but Randy and Down syndrome research is nearly always on our minds.”
Keith and Kate often express how they are “forever grateful” for the support and funding from the Global Down Syndrome Foundation. “We are so inspired by the generosity of Anna and John Sie, and by Michelle’s tireless dedication to her daughter and everyone with Down syndrome,” says Kate.
Keith agrees, “Their vision of a world-class academic home for Down syndrome research created the Crnic Institute and paved the way for better medical care for people with Down syndrome including Randy.”
“How I gravitated towards Down syndrome was something of magic,” continues Keith. “I believe things happen for a reason, and there is a reason I am here. To truly make a difference in the lives of people with Down syndrome, and we might just make a difference in cancer research, Alzheimer’s, and autoimmunity along the way!”
Keith recently received the 2020-2021 University Research Awards for Outstanding Senior PRA and was recognized for his work during the COVID-19 Pandemic. Congratulations to Keith Smith! GLOBAL is proud and grateful for his many contributions to research benefitting our loved ones with Down syndrome.
A Holiday Message from GLOBAL President & CEO
Michelle Sie Whitten
December 22nd, 2021 by admin
Building More Than Muscle
October 13th, 2021 by admin
From Down Syndrome WorldTM 2021 Issue 3 of 4
Denver Bronco Justin Simmons and GLOBAL model Leeon Grullon share how balance is the key to good health and a good life.
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! “WHEN LEEON WAS BORN, I could tell something was different about him from his physical features. It wasn’t until a few days later, when Leeon was in the ICU unit, that I received his Down syndrome diagnosis. The nurse who told me said it was best to give him up for adoption,” says Florida native and mother of two, Karla Cubilla. “It was a confusing and emotional time, but I was strongly bonded to Leeon and determined to move forward in life with him, whatever it took. All my efforts went into making sure he was healthy.”
As a professional nutritionist, Karla understands the huge impact that a person’s health makes on their overall quality of their life. Leeon (now 25) and his big sister, also named Karla (26), were raised to prioritize wellness and self-care to live a well-rounded healthy lifestyle. The goal is to find balance in all their activities. This includes a focus on the usual health elements like eating a nutritious diet, incorporating adequate supplements, and exercising regularly, while also keeping up with other important elements that often get overlooked, like social activities, mental stimulation, and emotional wellbeing. Today, the family is living happily in San Antonio, Texas. Karla, the mother, met her fiancé John in San Antonio and is currently building her own nutrition company for athletes. Her daughter Karla is now a licensed occupational therapy assistant in the city, while also managing her own family business. Leeon is a competitive powerlifter and athlete in Special Olympics. In his free time, he enjoys lifting weights and playing sports with friends, while also working on his other talents like DJing, cooking, and Karate. The family has found a variety of fun social activities in their new city, allowing them to continue their balanced lifestyles.
When Leeon was selected as a model for Global Down Syndrome Foundation’s Be Beautiful Be Yourself Fashion Show in 2018, he brought his bright, positive spirit into the spotlight. Leeon’s energy filled the room, and eventually caught the attention of Denver Broncos’ Justin Simmons. Leeon was thrilled to hang out with Justin. The two posed for photos together, where smiles for the camera quickly became a show of muscle flexing and laughter.
“Events like GLOBAL’s fashion show provide an opportunity to learn from amazing people and give back. We all need a community of support and love to be our best selves,” says Justin, who is a dedicated GLOBAL supporter and a regular attendee of the event. He has a similar outlook to Leeon on creating a full, balanced life. “When everything in your life is in line, it allows you to welcome and seize opportunities as they come your way.”
EARLY INVESTMENT
To create a supportive environment for Leeon, his mother Karla had to create a community from the ground up. “The biggest challenge in raising Leeon was the lack of supportive resources. Sure, I was directed to programs and specialists, but it was up to me to find within and around, that heart-centered emotional support.” At the time Leeon was born, there was no local Down syndrome organization in the area, so Karla used the online community to connect with other parents raising a child with Down syndrome. One common theme Karla learned from the stories she read was the importance of having a strong support team starting at early childhood. Before Leeon was one, he was already enrolled in specialized educational and therapy programs.
Leeon’s teachers have played a big role in his journey so far, influencing both his cognitive progression and at times, regression. “Leeon has had some amazing teachers in his life, ones who really challenged him and pushed him to get to the next level, and then there were others who lacked patience and understanding, which is disheartening to see in the field,” Karla explains.
With varying levels of teacher support from year to year, Leeon’s academic career had ups and downs. To get Leeon back on track with school, he and his mom developed a structured home-school schedule. “For anyone, and especially for people with Down syndrome, repetition is important because it reinforces learned behaviors and allows you to build upon that and grow,” Karla says. The schedule followed the same guidelines they used in their healthy lifestyle planning: establish a balance and create healthy habits in multiple areas of life that all feed into accomplishing a bigger goal.
Leeon’s home-school routine included time blocks for homework and studying, family time, physical exercise, social activities, and pursuing his hobbies. Karla’s goal was to bring balance while reinforcing the things Leeon was learning through tutoring, which his previous school had not provided enough of. Establishing a routine creates a work-life balance that allows Leeon to easily manage all the things he wants to do, rather than feeling too overworked in one so another is deprived. For example, after a study session with tutors, Leeon would do something that he enjoyed even more and was both fun and healthy, like lifting weights and doing cardiovascular-friendly routines at the local gym with his friends. “It’s all connected. There was a beautiful integration of Leeon’s growth, while he was becoming a better athlete and a teammate, it was at that same time that his reading and language skills excelled,” Karla says proudly.
Leeon’s lifestyle allows him to center his day around doing what makes him happy. According to Leeon, “I lift weights, that’s how I’m so good looking! I bench press, do push-ups, and lift dumbbells. I like to go to Karate. All the time my mom has me doing yoga. I like it too.”
At just 25 years old, Leeon has accomplished a skill that many people spend their lives trying to master and don’t: discipline.
ROAD TO THE NFL
In 2016, the Denver Broncos selected Justin Simmons in the third round of the NFL draft, and Justin has been the team’s free safety since. The Virginia-born, Florida-raised athlete attributes his success to his faith and a supportive community of friends and family. “I grew up in a Christian home with a white mother and a black father, and I was the oldest of three boys. At times, it was difficult to get both sides of the family to agree on things. But in the face of arguments or disagreements, my parents taught us to unite by putting our faith first. This devotion to our faith allowed us to turn those challenges into opportunities for growth and love.”
This philosophy has guided Justin through his career and his life. “My parents always let me make my own decisions and supported me whether they agreed with them or not. With that strong support from them and my faith in God, I knew everything would be okay,” Justin adds.
In high school, Justin preferred basketball as his top sport and had dreams of playing in the NBA. When he began to receive college scholarships for football, he reassessed his options and started to focus on finding his intended path. He was thrilled to get a full scholarship offer from Boston College and eagerly accepted the opportunity.
“Playing college football was extremely humbling. You go from being the best player in your high school to playing in college, where every guy was the best in their high school,” says Justin. “The first couple years were really tough. You’re tempted to get discouraged and doubt yourself, but you have to keep grounded and just earn your spot.”
Justin explains how in these moments, your faith and discipline are being tested and it’s your job to call upon yourself to rise above it and prevail. “Be mindful of what you’re giving your attention to, don’t get caught up in other people’s negative perceptions. There’s a reason you’re driven to do certain things and a reason you’re presented with opportunities to do them. All you have to do is do those things to the best of your ability.”
Entering the NFL, where the competition, criticism, and pressure is magnified times 100, is just another test of strength and character. “As athletes, we’re constantly picked apart and criticized. Mental health is so important because without it, you may start to believe those negative perceptions reflect who you are. What’s most important is being confident in who you are, and knowing you are much bigger than football.”
Outside of football, Justin loves spending time with his family. He is married to his high school sweetheart, Taryn, and together they have a beautiful three-year-old daughter Laney, and another baby girl on the way. Justin and Taryn’s goal as parents is to love their girls and raise them to be the best versions of themselves.
Justin has been recognized locally and nationally for his leadership in the community. He was recently elected a Broncos team captain for the 2021 season. Justin has received the Denver Broncos’ Community Ambassador Award, the Darrent Williams Good Guy Award in 2017 and 2019, and was selected as the team’s Walter Payton Man of the Year Award nominee in both 2019 and 2020.
Justin and Taryn launched the Justin Simmons Foundation in June 2020. “I know that if my community of support hadn’t invested in me, I wouldn’t be where I am today. We need to invest in our youth. They are the future,” says Justin. The foundation provides various services to young people, including opportunities for mentorship, education, athletics, and more. “Launching during a pandemic was definitely not what we expected, but we’re proud of the work we’ve done so far. Now with COVID restrictions lifting, I am really looking forward to getting together with the kids and meeting them face to face!”
As Justin has experienced firsthand through his work with GLOBAL and other Down syndrome organizations like Best Buddies, children who are differently-abled are key members of our youth. “There’s so much we can learn from people with Down syndrome. Their attributes of kindness, generosity, and love are a blessing to everyone around them. They are super smart and capable of accomplishing great things when given a chance to reach their potential.”
As a son, brother, husband, father, friend, and teammate, Justin aims to be a source of inspiration, hope, and support for others.
COMMUNITY OF LOVE AND SUPPORT
Leeon and Justin have learned that having a good life is easy, all you need to do is build yourself to be the best version of you. GLOBAL’s Be Beautiful Be Yourself Fashion Show, where Justin and Leeon met in 2018, embodies that exact philosophy. The event brings people together from all over the world, united to celebrate and support people with Down syndrome.
Justin recalls, “My first time attending GLOBAL’s Fashion Show, I went in thinking it would be a fun, good thing to do with my teammates. You walk in excited to see these big stars like Jamie Foxx and Shia LaBeouf, but then you realize, it’s not even about them. The entire night is about the people with Down syndrome, and everybody knows it. You’re focused on how much fun the models have on the runway and learning about the advocacy efforts to support them. I left feeling so humbled and inspired.”
Leeon loved every minute of being a GLOBAL model. “The whole thing was amazing. It was one of the best nights of my life. My favorite part was waking up that morning, getting dressed up and ready to model for the big show. Taking pictures with professional athletes backstage was another favorite moment,” he says, keeping it cool and just happening to leave out that he walked down the runway with a Broncos cheerleader on each arm!
The Be Beautiful Be Yourself Fashion Show is the largest fundraiser for Down syndrome in the world, having raised over $22 million for life saving research and medical care. The event has received 17 national awards and continues to attract over 1,400 people each year, including featured celebrities such as John C. McGinley, Beverly Johnson, Peyton Manning, Queen Latifah, Natasha Bedingfield, Alec Baldwin, Eva Longoria, and more.
“Quincy Jones set the stage for using his celebrity platform to promote important causes, like Down syndrome awareness. When it comes to philanthropy and giving back to the community, Quincy is the ultimate role model and a living legend,” says Justin. Every year, GLOBAL gives the Quincy Jones Exceptional Advocacy Award to two strong leaders in the community, one leader with Down syndrome who can speak directly for their community and another person with a celebrity platform who can share GLOBAL’s message to the masses.
“The event itself is a huge awareness-raiser featuring over 20 models with Down syndrome some of whom are celebrities in their own right,” says GLOBAL President and CEO Michelle Sie Whitten. “The evening actually changes you, especially if you are new to the Down syndrome community. You walk away understanding what discrimination and struggles we face, but also celebrating our advances in inclusion and life-changing research and medical care.”
Karla’s main takeaway was a common one that many parents have: good health is the common denominator for a good life. Karla tells, “As parents of children with Down syndrome, we’re always asking questions. Information is a vital part of our journey. It is with information that we can better understand the unique physiology of our children with Down syndrome and learn how to best assist them. Information makes us aware of choices that could enhance our child’s life. My continuous search for information is what led me to the Global Down Syndrome Foundation. GLOBAL is a valuable source for information, they have answers to our questions, even for the ones we didn’t know to ask. We need to help GLOBAL advocate for increased funding for Down syndrome research.”
SAVE THE DATE! To buy tickets for GLOBAL’s 2021 virtual Be Beautiful Be Yourself Fashion Show, visit bebeautifulbeyourself.org
What You Should Know About Celiac Disease & Down Syndrome
September 28th, 2021 by admin
From Down Syndrome WorldTM 2021 Issue 3 of 4
Symptoms, Treatment, and Misconceptions
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! WHAT IS CELIAC DISEASE?
Celiac disease is an autoimmune disease that is triggered by eating gluten. Unlike a gluten intolerance, celiac disease damages the small intestine, making it difficult for the body to absorb much-needed nutrients. About 1% to 3% of the general population is estimated to have celiac disease, but one recent study estimates that people with Down syndrome are six times more likely to develop celiac at some point in their lives. Celiac disease can cause intense pain and have major long term health impacts. It is important for people with Down syndrome to learn to recognize the symptoms and to follow a strict treatment protocol in order to maintain a good quality of life.
MEGAN’S DIAGNOSIS
Megan Bomgaars, reality TV star and GLOBAL Q-Awardee, inspires people all over the world with her incredible advocacy. She’s known for her big personality and ability to move a room to tears with her powerful words. What many don’t know about this strong woman is that she also has celiac disease.
Megan’s mom, Kris Bomgaars, recalls when Megan’s doctors told her Megan was experiencing failure to thrive, a medical condition characterized by inadequate growth. She was small for her age and had chronic sinus infections. By the first grade, she was experiencing abdominal pain, vomiting, and constipation on an almost daily basis. Megan’s teachers told Kris that these symptoms were the result of school avoidant behavior and a bad attitude, but Kris didn’t buy it. “Well, I knew as a mom, and also as a special education teacher, that she actually really loved school, and she loved every subject in school,” Kris remembers. Kris noticed that Megan’s gastrointestinal symptoms consistently occurred after eating the school-provided lunches every day, which made her think that Megan was having a reaction to ingredients in the meals. It still took months of advocating for her daughter to get a diagnosis. “There was one week I took her to the pediatrician every single day because she was literally crying in pain.”
At first, Megan’s doctors diagnosed her with malrotation (a condition where the intestines do not form correctly), but when they performed surgery, they found that Megan’s small intestines had completely atrophied. It was only then that the doctors confirmed that Megan had celiac disease through a blood test and a biopsy.
LEARNING ABOUT CELIAC DISEASE
Megan’s story is a common one for people with Down syndrome who also develop celiac disease. Dr. Marisa Stahl, a pediatric gastroenterologist at the Colorado Center for Celiac Disease, says that the wide variance of symptoms and overlap with other autoimmune and gastrointestinal disorders (common in Down syndrome) makes diagnosing celiac disease difficult, especially with children who may have difficulty expressing their symptoms. Celiac disease can develop at any age and having a celiac diagnosis also may indicate that you have a predisposition for developing other autoimmune diseases.
The most common symptoms of celiac disease include:
- Abdominal bloating and pain
- Chronic diarrhea
- Vomiting
- Constipation
- Brain fog or headaches
- Weight loss or poor weight gain
- Irritability
- Delayed growth or puberty
- Fatigue
- Anemia
- Behavioral changes
Any or all of these symptoms could indicate celiac, although Dr. Stahl notes that celiac can also manifest as other symptoms of autoimmune disease. She says, “It can affect every system in your body. Continued exposure to gluten over time can lead to long-term consequences, such as poor growth, vitamin deficiencies, neuropathies, osteoporosis, and certain intestinal lymphomas, just to name a few.” It is also possible to have celiac and not have any symptoms, a condition known popularly as “silent celiac.”
Even asymptomatic celiac disease causes damage to the small intestine, so screening is important for those who may be at higher risk. There are two common tests for celiac disease: the first is a blood test, also known as the tTG-IgA Test. Because eating gluten causes an increase in certain antibodies for people with celiac, testing for these antibodies in the blood of someone who might have the disease often can point doctors in the direction of a diagnosis. If the blood test reveals an increase in those antibody responses, medical professionals will administer the second test, an endoscopic biopsy. This biopsy is a minor surgical procedure where a doctor will test a small part of the patient’s small intestine for signs of damage. The biopsy is currently the most common way to diagnose celiac disease. There are some special circumstances where the diagnosis may be made based on additional blood testing.
WHAT IS THE TREATMENT FOR CELIAC?
The only treatment for celiac disease is a total and lifelong gluten-free diet. This diet relies not only on eating gluten-free food but also on embracing a gluten-free lifestyle. Some forms of celiac are more sensitive and require elimination of all gluten-free products, but eliminating any ingestion of gluten is essential. As Megan learned through her journey with celiac, many shampoos, toothpastes, cosmetics, and even stickers contain gluten. Many medications have some form of gluten as one of their ingredients. Cross-contact is also an issue: the same kitchen equipment used to prepare meals with gluten cannot be used to prepare gluten-free food. Once Megan started her gluten-free diet (she also eliminated dairy), her symptoms disappeared, and she began to thrive in a way Kris had not seen before. She grew four inches over the summer, her previously frequent sinus infections ceased, and she no longer had the daily abdominal pain or other gastrointestinal symptoms that made school so difficult. Kris remembers being amazed at the transformation: “All it took was a diet change, and it changed the entire course of her life.” Megan does not remember life before the diagnosis, but she is very aware of the consequences of coming into contact with gluten based on a few accidental encounters over the years. Even the smallest contact will make her sick for days.
There is ongoing medical research for other treatments for celiac disease, including some promising medications, Dr. Stahl says, but none of them are currently as effective at preventing symptoms and long-term damage as a gluten-free lifestyle.
COMMON MISCONCEPTIONS ABOUT CELIAC
Because of the recent popularity of gluten-free diets over the past decade (especially due to high profile celebrities adopting this diet), there has been an exponential increase in the availability and awareness of gluten-free food. Restaurants like P.F. Chang’s (one of Megan’s favorites) have begun providing designated gluten-free menus with procedures to ensure no cross-contact. Kris notes that stricter labelling laws have also made it much easier to determine if a product is gluten-free, and because labels are more accessible, Megan has gained independence over her shopping and eating habits. There are even apps now where you can scan the barcode of a product, and the app will tell you if it contains gluten. Kris says that it is much easier now to navigate eating out than it was when Megan was first diagnosed. “I mean, in the beginning, I remember one time I asked for a gluten-free menu, and this poor server handed me a martini menu,” she recalls.
However, this newfound trend of gluten-free diets has also led to some misconceptions about celiac as well. Dr. Stahl believes that this is in part due to “a lot of celebrities who also follow a gluten-free diet because they perceive it as being healthier. As a result, there are a lot of restaurants that have developed, for instance, gluten-friendly menus, but they’re really not taking the strict precautions that you need to take in order to ensure serving safely gluten-free foods, things like cross-contact.” Kris says that at first, people sometimes believe that she and Megan follow a gluten-free diet as part of a fad, not realizing the serious consequences of Megan eating gluten. One of the more difficult challenges of Megan’s diagnosis was educating family members. She recalls asking, “Does grandma really understand what gluten is? Because for that generation, celiac disease really wasn’t that big of a deal.”
On the other hand, Kris said that some parents of Megan’s friends stopped inviting her to birthday parties or to other playdates because they were afraid of the consequences of accidentally feeding her gluten. “She didn’t get a lot of invitations until I started saying I’ll pack every ounce of food, you don’t need to worry about it. It’s not anaphylaxis, so it’s not like a peanut allergy.”Much of social life in the U.S. and around the world revolves around food and dining out, so it can be extremely difficult for people with celiac to maintain a social life if the people around them are not willing to learn or accommodate their dietary needs.
WHAT SHOULD I DO IF I THINK MY CHILD OR I MIGHT HAVE CELIAC?
Dr. Stahl notes that while there is no consensus on screening guidelines for celiac disease for people with Down syndrome, her center recommends that screening begin at 3 years of age, unless symptoms begin to develop earlier. She also notes that screening should continue at intervals because celiac disease can develop at any age. It is important to note that these symptoms could also indicate other gastrointestinal or autoimmune conditions; it is also important that you consult your doctor if you suspect your or your child’s symptoms might be caused by celiac. Trying to implement a gluten-free diet on your own without a diagnosis and support from medical professionals and a dietitian is not advisable, Dr. Stahl says. You could be eliminating important sources of fiber and other nutrients without the proper education. She also advocates that anyone diagnosed with celiac disease, especially those with Down syndrome, see a psychologist. Major changes in diet, especially if food is a source of comfort or social inclusion, can have a negative impact on mental health, so it is important that someone recently diagnosed with celiac develop support systems.
Kris recommends that if you or your child has recently received a diagnosis of celiac that you join a celiac support group. “The best advice I got was from other people who had celiac disease,” Kris shares. The one that Kris joined when Megan was first diagnosed helped her learn to read labels and other strategies for how to determine which foods were safe.
Megan says that her diagnosis doesn’t prevent her from enjoying food. She enjoys rice, sushi, gluten-free and dairy-free pizza, and making her own ice-cream sundaes.
To learn more about celiac and to find resources, please visit
celiac.org/about-celiac-disease/symptoms-of-celiac-disease
How An Unexpected Diagnosis Unveiled A Beautiful Treasure
July 29th, 2021 by admin
Caterina Scorsone and family (photo by Rebecca Couresy)
Actress, advocate, and mother of 3, Caterina Scorsone shares how having a child with Down syndrome challenged her to open her mind. What she discovered changed her life.
Best known for her role as Dr. Amelia Shepherd on ABC’s Grey’s Anatomy, award-winning actress Caterina Scorsone has spent her career playing different characters by learning how to empathize and connect with people, a skill she developed as a child actor in Canada. In November of 2016, Caterina received unexpected news and she had to prepare for her most challenging role yet: mother to a child with Down syndrome.
When Caterina learned that her daughter, Paloma, “Pippa,” had Down syndrome, she recalls feeling scared and intimidated by the diagnosis. “I have always been the type of person who tackles challenges with careful planning and thoughtful preparation, and this, I was completely unprepared for,” Caterina explains. “And that caused me so much anxiety and worry. What type of mother did that make me, not knowing how to care for my own child?”
Honing her years of practice studying how people think, feel, and act, Caterina realized she had all the tools she needed to be a good mother to Pippa. “No one is ready for a Down syndrome diagnosis for their child, but they become ready one way or another, because they have to.
“Pippa has taught me how to be a better mother to all my children, and to be a better person in general. A better friend, sister, daughter, colleague,” says Caterina, who is using her public platform to share her parenting experiences with the world.
A rising advocate in the Down syndrome community, Caterina hopes to spread awareness to society and serve as a source of information and support for families.
Caterina Scorsone with her family (photo by Rebecca Couresy)
Motherhood
Today, Caterina is a mother to three beautiful children: Eliza (9), Paloma aka “Pippa” (4), and Lucinda aka “Lucky” (19 months). She says that while they are all very different from each other, the thing all her children have in common is their very distinct and strong personalities. The proud mother describes Eliza as the problem-solver and creative thinker, Pippa as insightful and determined, and Lucky as fun-loving and strong.
Caterina shares how her ever-changing and ever-growing journey as a parent has continued to challenge her and teach her important lessons.
“When I was pregnant with my first, Eliza, I was so excited and ready to be a mom. I wanted to make sure I was the best mom I could be, so I read all the books and articles I could find on parenting. It was like preparing for a role. By the time Eliza was born, I felt really prepared.
“Three years later, when Pippa was born, the whole game changed. When we received her Down syndrome diagnosis, I was scared. I was intimidated by my lack of knowledge and skill in this area. I didn’t know what her needs would be or how I would meet them. I worried about what the future would hold for her.”
Searching for support and information, Caterina was frustrated by the lack of resources available to new parents of children with Down syndrome. She recalls how, at first, she allowed her frustration to take over, and her mind became overwhelmed with thoughts of fear, worry, and doubt. “My mind was stuck in the future, worrying about all the what-ifs, that I was missing the what-is right in front of me,” Caterina explains.
Caterina realized she needed to put her worries aside and move her focus to the real priority – which was to be there for her children. Shifting her focus to Eliza and Pippa, Caterina’s worries transformed into curiosity. She observed how the two interacted with each other and how both were developing and growing, in their own ways, at their own speed.
Caterina describes Pippa as very determined, insightful, sensitive, fun, and honest. “One of the most beautiful things about Pippa is how connected she is to her experience. If she wants to do something, she is very excited to do it and thoroughly enjoys it. And if she doesn’t want to do something, she is very connected to her gut and knows what she doesn’t want. Pippa’s self-acceptance frees her limiting beliefs, like worry about other people’s expectations of her.
“Once I embraced the diagnosis, I was able to appreciate what it invited into our lives, which was a beautiful shift in perspective that enhanced our whole way of living. Pippa has forced me to leave behind preconceptions about who people are and what they should or should not be like. It allowed me to see every person I encounter as completely unique, no longer subjected to some sort of list of standards that people are either succeeding or failing to live up to. I had to radically reconsider everyone’s individuality, including my own.”
In December of 2019, when Caterina had her third daughter, Lucinda, “Lucky,” she felt more prepared than ever before. Caterina knew this newfound life perspective would instill important values in all her kids and that she could handle any challenge that comes their way with grace. Similar to the creative environment she grew up in, Caterina says the family enjoys lots of dressing up and dance parties together in their home.
Pippa Scorsone daugther to Caterina Scorsone (photo by Rebecca Couresy)
Giving Back
“When Caterina took to Instagram to announce Pippa’s birth and diagnosis with excitement, we could tell right away that she was one of us and that she would be a powerful voice in the Down syndrome community,” says GLOBAL President and CEO, Michelle Sie Whitten. “After developing a relationship with her over the next several years, and learning about her passion for our research, we proudly selected Caterina as the recipient of our 2020 Quincy Jones Exceptional Advocacy Award, GLOBAL’s most prestigious honor.”
Due to COVID-19 restrictions, Caterina accepted the award virtually at the 2020 Be Beautiful Be Yourself Fashion Show. Caterina was proud to be a co-awardee with Spanish model Marián Ávila, who is dedicated to getting people with Down syndrome more represented in the media. “Marián is such a beautiful person inside and out. After the show, she even mailed me a box of ‘Congratulations’ chocolates! It was such a personal, sweet touch,” Caterina remembers.
As a GLOBAL advocate and spokesperson, Caterina aims to use her public platform to raise awareness about Down syndrome and help new parents navigate the diagnosis. “I want to help new parents feel less scared and more excited about their child’s future, knowing that they have support,” she says. “My hope is that as a culture and a society, that we can learn to lead with the person, not the diagnosis. That we can recognize the humanity in each one of us. The Global Down Syndrome Foundation embodies that vision.”
One of the elements of GLOBAL’s work that Caterina feels most passionate about is the breakthrough research. “GLOBAL’s research arm, the Crnic Institute, published a groundbreaking study on how the overactive immune system in people with Down syndrome is part of a different disease spectrum, which opens up so many opportunities for research,” Caterina explains. “It’s really hard as a parent to make sound medical decisions for your child when the information that your doctor has is often not complete based on the genetic makeup of our kids with Down syndrome. It’s priceless to have the full picture of information.”
Caterina encourages families who are interested in advocacy to read about the important breakthroughs in research on GLOBAL’s website and to join them in their fight for increased federal funding for Down syndrome research.
Pippa Scorsone daugher of Caterina Scorsone (photo by Rebecca Couresy)
“Down syndrome is just one aspect of the deep and multi-faceted human beings that have the condition,” Caterina continues. “I’ve found that the key to being a good parent, and a good person, is in curiosity. Be curious about your children and who they are. Be curious about yourself. Be curious about what scares you. Lead with the search for knowledge and understanding, rather than judgement, and you will be surprised by how much you will continuously learn about the world.”
To learn more about Caterina and to watch her inspiring Quincy Jones Award speech, visit www.bebeautifulbeyourself.org/caterina-scorsone
To access GLOBAL’s informative resources on research and medical care, visit www.globaldownsyndrome.org/about-down-syndrome/resources
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!
1% BETTER EVERY DAY
April 28th, 2021 by Global Down Syndrome Foundation
From Down Syndrome WorldTM 2021 Issue 1 of 4
WITH IRON WILL & DETERMINATION, FLORIDA ATHLETE MAKES HISTORY
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! WHEN MANY OF US HEAR THE WORDS “IRON MAN,” we might think of the rich Marvel hero in a flying suit. For the 21-year-old athlete, Chris Nikic, “Iron Man” means he can do anything he sets his mind to. In November of 2020, Chris became the first individual with Down syndrome to complete an Ironman triathlon competition, earning him a coveted spot as a GUINNESS WORLD RECORDS® holder as ‘First person with Down’s syndrome to complete an IRONMAN® triathlon.’
The Ironman consists of a 2.4-mile swim, a 112-mile bicycle ride, and a 26.22-mile run. In the world of triathlons, this is considered to be one of the most challenging one-day events. Chris made history by competing in and finishing the race, and serves as an inspiration to the Down syndrome community and the world.
An ambitious attitude, drive, and family support have been the driving forces to propel Chris to new and more extraordinary accomplishments.
“I want to be a world champ at something!” Chris added to his list of New Years’ Eve goals in 2018.
Chris and his father Nik did research and some soul searching to determine that the Ironman triathlon was the way Chris would accomplish that. Nik, who is also an athlete, was ready to train for, and compete in, the triathlon with his son.
Nik made sure Chris was ready to put in the work. “I told him, if you sit on the couch playing video games, you will never get your dreams,” says Nik. “But if you work hard to accomplish your goals, you can do an Ironman and become a motivational speaker.”
After Chris set his intention to compete in Ironman, there was no stopping him. Little did he know what would continue to unfold after successfully completing this intense race.
A FORCE TO BE RECKONED WITH
Chris trains with the mindset of becoming 1 percent better every day. “I built my core 1% at a time. A year ago, I started by doing one push up, one sit up, and one squat. Then every few days, I did a little more,” Chris tells. “Eventually, before Ironman, I was doing 200 of each plus weights, pull-ups, and other strength exercises.”
Chris trains from 3 to 8 eight hours per day, with some stretching and recovery in between. He runs, bikes, swims, and completes strength training four times a week. On the weekends, training is kicked into even higher gear, “I’ll put in 6-8 hours of training each day when I do my 100-mile bike rides, and 18-mile runs.”
Chris’ training is not just physical. His dedication requires a lot of mental strength training too. Chris maintains that anything is possible as long as he can get 1 percent better each day. This mentality helps him stay focused and enjo y his training more.
If Ironman training wasn’t already hard enough, Chris had t o deal with the threat of COVID-19. He admits that training during an unprecedented worldwide pandemic was more challenging, but he wasn’t going to let that get in his way. “There were no gyms to work out in, no lakes to swim or bike trails to ride on,” Chris explains. “So we found ways to train in my home, pool, and neighborhood. It was much harder and less fun, but we found a way to do it anyway.”
THE FOUNDATION OF COMMUNITY
Throughout his training process, Chris had great support from h is family, friends, and community organizations.
Chris and his dad Nik started with intensive training sessions, but when Nik got injured, he decided he was not going to compete in the race and shifted his efforts to being the best coach and cheerleader for Chris.
“Some days, it felt too hard, and I felt like I couldn’t do it,” Chris recalls. “But my dad kept reminding me of my dreams and how important it is to fight for your dreams.”
Chris joined a triathlon club and was paired with a special training coach through the Special Olympics. “My guides at Special Olympics, Simone and Dan, made it fun and helped me through my journey to compete,” Chris tells. “My family and friends were there every step of the way. I thank God for all the special angels he brought into my life.”
“Watching Chris cross that finish line with a huge smile on his face was a moment I will never forget,” says Patty, Chris’ mother. “Seeing your child accomplish something they have worked so hard for is something every parent dreams
of experiencing.”
Chris’ impressive athletic accomplishments have been recognized around the world. His story was featured in national media everywhere including outlets like ESPN, New York Times, Today Show, CNN, NBC, Sports Illustrated, and more.
Special Olympics named Chris a Champion Ambassador, invited him to compete in the USA games, and honored him with the Florida Hero award where he met the state’s governor Ron DeSantis. Ironman gave him the title of Global Ambassador and invited him to Hawaii for the next Ironman competition.
When asked how all of this feels, Chris responded with a simple “I am living my dream.”
HIS SPECIAL MESSAGE FOR THE WORLD
“People have been telling us our whole lives what we can’t do,” says Chris. “And I want to tell you to stop listening to those opinions because they are wrong. We are capable of so much more. Yes, we have disabilities, but we also have big abilities.”
Chris wants to share his experiences and message with the world. He is working on publishing a book this year and he has secured several public speaking events with companies like Dell and Microsoft.
To encourage other athletes in his community, Chris has also launched his own “1% Better Challenge” to promote Down syndrome awareness. The process is simple. Partner up with a sponsor (friend, family, coach), set a 30-day goal you want to achieve, and post your progress with your partner on social media.
“I want to inspire others the way that my community has inspired me. The inclusion revolution is real! Nothing is too big to accomplish or too challenging to do if you commit to being 1% percent better every day.”
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 Grants.
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