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From Down Syndrome World^TM 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.
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From Down Syndrome World^TM 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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From Down Syndrome World^TM 2020 Issue 2 of 4

AMID A WORLD-WIDE PANDEMIC, THESE SCIENTISTS HAVE FOUND THEMSELVES IN A UNIQUE POSITION TO HELP, THANKS TO YEARS OF STUDYING THE EXCEPTIONAL BIOLOGY OF PEOPLE WITH DOWN SYNDROME.

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!

CONTRIBUTING IN A MEANINGFUL WAY to the body of science and medical practice surrounding an unprecedented world-wide pandemic is not something most people ever get the opportunity to do. It certainly was not what Executive Director of the Linda Crnic Institute for Down Syndrome, Dr. Joaquín Espinosa, and his team of scientists were thinking about in early March 2020.

During this time, the University of Colorado Anschutz Medical Campus (CU) shut down all research operations, locking scientists out of their buildings and laboratories in response to and to prevent the spread of the novel coronavirus (COVID-19) pandemic. Thankfully, Dr. Espinosa and the Crnic Institute team had their valuable experiments and supplies already gathered and stored away safely. With numerous grants from the National Institutes of Health (NIH), the National Science Foundation, and others, the team had plenty of work that could be performed remotely – analyzing data, writing up results for scientific journals, and preparing new proposals for funding.

Their biggest worry was something they could not work on remotely – the delay of their NIH clinical trial grant to treat autoimmune diseases in people with Down syndrome. In 2016, shortly after launching the Crnic Institute Human Trisome ProjectTM (HTP), the Crnic Institute made one of the most important scientific discoveries – Down syndrome can and should be characterized as an immune system disorder.

In particular, they discovered that an immune system pathway called the “interferon pathway” was “lit up” in people with Down syndrome pretty much 24/7, versus in typical people where it is only turned on when they are fighting a virus or infection and then it turns off.

The constant taxation of the immune system in people with Down syndrome creates low intensity inflammation that over time probably contributes to the co-occurrence of various diseases, including dementia. The Crnic Institute discovery was even more consequential because there are FDA-approved drugs that turn down the interferon pathway in typical people. Crnic Institute scientists were about use one of these FDA-approved drugs, a JAK inhibitor called tofacitinib, in an unprecedented clinical trial for adults with Down syndrome when the pandemic forced lab closures around the world.

AN “AH HA” MOMENT
As serendipity would have it, two days into quarantine, the Crnic team was doing a quick review of the research literature on COVID-19. Their findings revealed something that was both shocking and yet made perfect sense – it appeared that hospitalized COVID-19 patients were displaying many of the same patterns of immune system dysregulation that the Crnic Institute team had spent years studying, analyzing, and annotating in people with Down syndrome.

In COVID-19, the body’s antiviral defense system, which utilizes the interferon pathway, is sent into overdrive, causing the release of high levels of inflammatory signaling molecules known as cytokines. In COVID-19 and other viral infections, this “cytokine storm” is associated with respiratory distress, heart damage, and higher mortality rates. Similarly, people with Down syndrome have higher-than-normal levels of interferon signaling and often display more of a mini cytokine storm, even without a viral infection. Crnic Institute scientists believe this could contribute to many of the hallmarks of and co-occurring medical conditions associated with Down syndrome and are working to understand those connections.

Within a week, Dr. Espinosa and the Crnic Institute were one of a handful of research teams allowed back, with COVID-19 safety measures, into their labs to work on COVID-19 treatments for the general populations and to understand the connection and possible affects and treatments on people with Down syndrome.

Today, Dr. Espinosa is the leader of an international consortium looking at JAK inhibitors to treat COVID-19. The treatment is one of several clinical trials that Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Disease at the NIH, has been supporting in the United States. The international consortium includes labs from the United States, China, Italy, France, Spain, Argentina, Mexico, Canada, Germany, and Denmark.

COVID-19 COULD BE MORE SEVERE FOR PEOPLE WITH DOWN SYNDROME
In reviewing the COVID-19 literature, Crnic Institute scientists also realized that people with Down syndrome should probably be considered a “high-risk” group for COVID-19. “High risk” means a person who gets COVID-19 has a higher probability of experiencing more severe illness than a member of the general population without other risk factors. This idea rests on the basis that the strength of the cytokine storm in COVID-19 correlates with disease severity and outcomes, and that people with Down syndrome will be more likely to develop a stronger, more prolonged cytokine storm due to higher levels of baseline interferon signaling. Although the direct studies of COVID-19 in Down syndrome needed to prove or disprove this idea have not yet been performed, ample supporting evidence already exists in the context of other viruses and in our basic understanding of immunology in Down syndrome.

It is also important to consider that people with Down syndrome have increased susceptibility to bacterial pneumonia. Although seemingly unrelated, it has been well documented that pandemics of respiratory viral infections are followed by a surge in cases of bacterial pneumonia, and that a large portion of deaths are actually attributed to secondary bacterial infections. Children with Down syndrome have much higher rates of viral pneumonia and bacterial pneumonia, with the latter being a leading cause of mortality in adults. Taken together, these known phenomena suggest that a person with Down syndrome who contracts COVID-19 would have an increased risk of also acquiring bacterial pneumonia.

PUTTING TOGETHER ALL THE EVIDENCE:
#1 – People with Down syndrome have higher levels of interferon signaling.

#3 – Both during and after infection with SARS-CoV-2, people with Down syndrome will be more likely to also contract bacterial pneumonia.

It is important to note that these are hypotheses and predictions based on existing evidence outside of COVID-19 and should be taken into consideration with caution. The studies needed to fully understand COVID-19 in people with Down syndrome are still just starting to get underway. The good news is, there are people with Down syndrome, with and without underlying conditions, who are surviving COVID-19. We simply need more data and to better understand this virus before we can definitively come to conclusion.

HOW DOWN SYNDROME RESEARCH FROM THE CRNIC INSTITUTE IS BEING UTILIZED TO STUDY AND TREAT COVID-19
Since March, every member of Dr. Espinosa’s team, from the basic scientists to the clinical researchers, and even the administrators, have been utilizing their unique skills and knowledge gained while working in Down syndrome to rapidly advance COVID-19 research at CU.

For example, Crnic Institute scientists immediately started testing potential therapeutics for the COVID-19 cytokine storm in their mouse model of Down syndrome, nicknamed Dp16. They weren’t actually exposing the Dp16 mice to SARS-CoV-2; they didn’t need to. Instead, the scientists could activate the immune system and stimulate a cytokine storm much like what is seen in COVID-19, simply by using a molecule that tricks the immune system into sensing a virus when there isn’t one. Crnic scientists then treat the mice with JAK inhibitors targeting the interferon signaling pathway that is chronically activated in people with Down syndrome and that drives the cytokine storm in COVID-19. The data resulting from these experiments will be extremely valuable because it can be interpreted and utilized in two contexts: COVID-19 and Down syndrome.

FIGHTING COVID-19 TOGETHER
Who would have ever guessed that Down syndrome research and the discovery that interferon signaling is chronically activated in people with Down syndrome would one day so greatly impact the science and research behind a historic, global pandemic? This meaningful contribution to the body of science and medical practice surrounding COVID-19 is something the Down syndrome community should be proud to be part of. Together, this community of researchers, self-advocates, families, and supporters can clearly make positive scientific impacts not only for people with Down syndrome, but also for the entire world.

THE CRNIC INSTITUTE HUMAN TRISOME PROJECTTM IN ACTION AGAINST COVID-19
At the beginning of the quarantine, CU assembled a centralized team tasked with rapidly creating a biobank to collect blood and other biological samples from COVID-19 patients. These samples would then be administered to researchers with approved projects. This model essentially replicates one of the Crnic Institute’s flagship research initiatives, the Crnic Institute Human Trisome ProjectTM (HTP). The HTP is generating multiple layers of “omics” data (think big data from sequencing all of someone’s DNA and RNA and measuring all their proteins, metabolites, immune cells, and much more) on hundreds of people with and without Down syndrome in order to understand the hallmarks of and co-occurring medical conditions associated with Down syndrome. Having heard about the Crnic Institute’s HTP and Biobank, the CU COVID-19 team reached out to Crnic scientists to tap into their expertise. The Crnic team shared detailed protocols and helped advise the CU team during the development of the CU COVID-19 Biobank.

As part of a synergized endeavor with the COVID-19 Biobank, leading researchers at CU also partnered with Dr. Espinosa and the Crnic team to replicate the experimental platform from HTP and apply it to COVID-19. The parallel effort by CU to apply the HTP platform to COVID-19 has been aptly dubbed “The COVIDome Project,” and Crnic scientists are leading the ongoing data generation to advance COVID-19 research for better diagnostics and therapeutics.

The Crnic team is also partnering with a national COVID-19 collaborative group to specifically study COVID-19 in people with Down syndrome. As explained earlier in this article, so much is yet unknown about COVID-19 in Down syndrome and numerous studies are needed to understand its impacts. The team is working with top data scientists at CU to identify differences in risk factors, symptoms, clinical course, immunological parameters, response to various treatments, and outcomes and long-term effects of COVID-19 in people with Down syndrome. Alongside these efforts, the Crnic team is also studying individuals with Down syndrome who have recovered from a SARS-CoV-2 infection as part of the HTP, in order to assess changes induced by COVID-19 across all the layers of omics data. Together, Crnic scientists hope these efforts will advance our understanding of interferon signaling and the cytokine storm in COVID-19 and Down syndrome and
inform the development of customized preventative and therapeutic solutions.

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From Down Syndrome World^TM 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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