Finding Her Voice

January 24th, 2020 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 4 of 4

Multi-Talented Performer Meg Ohsada Has Learned That, When It Comes To Communication, Words Aren’t Always Necessary.


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!

MEG OHSADA, a Canada native who happens to have Down syndrome, has become an international superstar known for her competitive figure skating and dancing with four Special Olympic medals and counting. She is also known for her extraordinary, widely-collected artwork. At just 25-years-old, Meg also has her artwork displayed and purchased at prestigious galleries around the world. And believe it or not, that’s not all she does! She recently took up rhythmic gymnastics and modeling, too.

Born to Japanese parents who immigrated to Canada, Meg is one of three girls. Although Meg is nonverbal, she communicates her powerful and inspirational messages through her passion for sports, fashion, advocacy, and art.

Her accomplishments serve as an inspiration to the Down syndrome community and she recently began modeling to continue her advocacy work for people who are differently-abled.

“Meg is the family’s backbone,” says her mother, Noriko Ohsada. “Her gentle presence has given us love, strength, inspiration, and hope for the future.

A DEDICATED FAMILY

Noriko, who immigrated to Toronto, Canada, from Japan with her husband, Kaoru Ohsada, did not know what Down syndrome was until Meg was born in 1993. In fact, Noriko recalls, she had to learn the word “chromosome” in English when a doctor told her that additional testing was necessary.

Noriko remembers being very scared when she researched the condition. She read that Meg would not live long and would need to be institutionalized. Thankfully, the medically inaccurate information did not deter her and Kaoru’s belief in Meg’s abilities.

From the time Meg was born, her parents noticed she was a happy baby and an energetic, passionate child. Shortly after Meg was born, Noriko and Kaoru had two more daughters: Sari, now 23, and Juli, now 22.

Meg always had difficulties with verbal communication and continued to struggle to talk after undergoing speech therapy.

In 1997, searching for a fresh start and better access to medical care, the family moved from Toronto to Canmore, a small town in Alberta, Canada at the edge of the Canadian Rockies. That’s where Meg’s remarkable artistic abilities began to take shape.

“As my children are close in their age, I always introduced the same activities to all of them,” Noriko says. “Figure skating was the perfect activity for the girls to be athletic and beautiful at the same time. I truly enjoyed watching them.”

“We noticed Meg could remember movements with music very quickly,” Noriko says. “That’s when we realized that performing arts was a way of self-expression.”

LOUDER THAN WORDS

Meg took to figure skating like a natural, impressing her family and her instructors by skating through intricate choreography, remembering every step. At age 8, she joined a local figure skating club and eventually began attending a weekly Special Olympics figure skating program in Calgary, about an hour from Canmore. Meg gets on the ice four to six days a week, for an hour or so a day. Plus, she does yoga, gymnastics, and other physical activities to stay in shape.

She has excelled as a figure skating competitor, earning two gold medals at the 2019 Special Olympics Alberta Winter Games and two silver medals at the 2013 Special Olympics World Games in Pyeongchang, South Korea. In 2015, she competed in the Canada Games, which features athletes of all abilities. She continues to inspire other skaters with and without Down syndrome at her home rink in Canmore.

Meg began her dance career at age 14 and attends four dance classes per week. She is also a rhythmic gymnast, a sport she took up at age 18.

She competed in dance in both the 2015 and 2017 Special Olympics World Games, placing fourth at the 2017 Winter Games in Austria. In 2017, she also performed a ballet solo with Ignite Dance at Banff Centre in Banff, Canada, near her hometown of Canmore.

A MULT-TALENTED ARTIST

Movement isn’t Meg’s only form of expression. At age 21, Meg began a career as an artist, taking classes at the Indefinite Arts Centre in Calgary.

Her artwork has appeared in galleries in Hong Kong, Seoul, and South Korea, and she was the featured artist at a local gallery, artsPlace, in Canmore.

Meg’s favorite piece is an abstract self-portrait of herself dancing.

“She expresses herself through art, and she loves public exhibition opportunities where she can get that recognition from other people,” Noriko says.

Last year, Meg took up modeling as a way to showcase the beauty and talent of people who are differently-abled. “I believe Sari and Juli learned many wonderful lessons from Meg, including her enthusiasm, optimism, and compassion toward others,” Noriko states.

Meg encourages everyone to work hard and find their own voice. Through her multi-faceted art forms, she shares an important message: “Do what you love, and great things can happen.”


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!

Changing the World One Stage at a Time

January 24th, 2020 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 4 of 4

When 16-Year-Old Courtney Gaines Has Her Eyes on the Prize, There’s No Stopping Her. Her Latest Endeavor? Rocking the Runway at Global’s Fashion Show with Model & Actress Mikaela Hoover


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!

An actress, singer, dancer, and model, 16-year-old Courtney Gaines is no stranger to the spotlight. She is an active member of her community, an Ambassador for a women’s non-profit, and most recently, an entrepreneur. She is determined to show the world that she can do whatever she sets her mind to. What better next stop than to model at the largest fundraiser for Down syndrome in the world?

“The more people see her, the more people love her,” says Courtney’s mother, DeAnna Gaines. Courtney is engaged with many local groups Oklahoma including the Greater Love Missionary Baptist Church, Shining Starz Special Needs Cheer Squad, Down Syndrome Association of Central Oklahoma, and the Air Force JROTC. “Seeing how Courtney’s energy radiates onto everyone around her, we looked for other opportunities for her to shine.”

When DeAnna and Courtney found the Global Down Syndrome Foundation (Global) online they were impressed by the organization’s government work and intrigued by Global’s fashion show. Courtney’s passion for performance and advocacy for inclusion seemed to make her the perfect fit.

“I love to help others and listen to them,” Courtney says. “I want to do good things for others in everything I do.” She is an Ambassador for GirlTrek, the largest national public health non-profit supporting African-American women and girls in the U.S., with a special strategy to connect with women with special needs. Truly a jack of all trades, Courtney also recently started plans for her own business, an online clothing store called CloZet 21c which would raise funds for non-profits.

Courtney’s vibrant personality, loving nature, and happy smile were evident in her audition and she became the first person in Oklahoma to be selected to model in Global’s marquee annual fundraiser, the Be Beautiful Be Yourself Fashion Show. Courtney rocked the runway with Mikaela Hoover, a model, actress, and Instagram influencer who is beautiful inside and out.

Mikaela learned about Global when working on a film in Colombia with her colleague, John C. McGinley, who is a Global board member and international spokesperson. Growing up, Mikaela was very close with her cousin Bobby, who had Down syndrome, and was eager to get more involved in philanthropic work. McGinley told her about Global’s work and Mikaela reached out right away to get involved.

SHINING STARS

Courtney was thrilled to work with a fellow model and actress. “It was so much fun modeling with her! We took selfies and photos backstage too,” Courtney recalls. “She is a great model, she’s so pretty, cool, and very nice.”

As natural performers, Mikaela and Courtney have a lot in common. Mikaela began dancing at the age of 2, and by the time she started school, she was starring in her school’s plays. Mikaela started her acting career in 2006 and is best known for her roles in superhero films including the 2014 box office hit Guardians of the Galaxy and the 2010 superhero dark comedy Super starring Rainn Wilson, Ellen Page, Liv Tyler, Kevin Bacon, and Nathan Fillion. Courtney loves to bring her talents of singing, dancing, and acting to the stage. She was recently in the stage production of Mary Poppins Jr. with Kaleidoscope.

“Courtney was so excited to be on that runway. She knew exactly what she wanted to do and the poses she wanted to strike, and no one was going to stop her,” says Mikaela, who was Courtney’s celebrity escort. “Courtney has so much ambition and carries herself with such grace and independence.”

Both first-timers at Global’s Be Beautiful Be Yourself Fashion Show, Courtney and Mikaela were soaking in every moment. “All of the models had such beautiful energy around them, each one was beaming and shining so bright. It was such an honor to be back there with them,” Mikaela says.

Courtney’s favorite part of the night was blowing her mom a kiss when she was at the top of the stage. “Nothing beats seeing my Courtney up there on stage, dressed to the nines, in the company of Mikaela
and of course our heroes like Jamie Foxx and Quincy Jones,” says DeAnna.

Global’s Be Beautiful Be Yourself Fashion Show raises critical awareness and funds for Down syndrome. This year’s event raised an incredible $2.5 million for Down syndrome research and medical care.

“Global is changing that the narrative surrounding Down syndrome through advocacy and education,” says Mikaela. “Their beauty simply shines from within, and that is definitely something that we need to see more of, not just in the media, but in our world today.”

“All of the models had such beautiful energy around them,” said Mikaela Hoover. “That is definitely something we need to see more of.”


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

Global Webinar – Medical Care Guidelines

January 9th, 2020 by Global Down Syndrome Foundation

Global Medical Care Guidelines for Adults with Down Syndrome: A Legacy Supporter Update!


What You Need to Know


Overview & Speakers:

We look forward to sharing our progress and to providing a sneak peek with you at our exclusive webinar for our generous Global Members and guideline supporters. This webinar is in addition to our quarterly Global Membership webinar series and is an exclusive, free benefit to YOU our Legacy Supporters. In this webinar Global President and CEO, Michelle Sie Whitten, and Director of Adult Initiatives & Special Projects, Bryn Gelaro, to present on the following topics:

Results from our focus groups

Success stories (already)

PICOTS & Grade System framework

Managing Expectations – what the guidelines do and do not include

Overachieving! Possible Toolkits…

Distribution, Education & Outreach

How you can help

Michelle Sie Whitten, MA

Michelle Sie Whitten, MA

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

Bryn Gelaro, LSW

Bryn Gelaro, LSW is a Licensed Social Worker with background in behavioral health with adults with Down syndrome. Bryn was a consultant for the Global Down Syndrome Foundation from 2015 to 2017 prior to her current position as the Director of Adult Initiatives and Special Projects. Her work includes supporting Global’s efforts to open a World Class Medical Clinic for adults with Down syndrome and overseeing international projects, including in Uganda and Albania. Bryn is the co-Author and project manager for the Global Medical Care Guidelines for Adults with Down Syndrome overseeing the communication between work group members, maintaining guideline deliverables and timeline, and managing the edits of the guideline manuscript. Bryn earned her Bachelor of Science in Psychology from the Pennsylvania State University and a Masters degree in social work from the University of Chicago. She completed her Master’s graduate field training at the Adult Down Syndrome Clinic in Chicago where she was fortunate to have mentorship from Dr. Dennis McGuire and Dr. Brian Chicoine.

Powerpoint Presentation: Click to Download


Important Notice

The Global Down Syndrome Foundation’s employees and/or volunteers are NOT acting as your medical professional or attorney. Responses you receive via electronic mail, phone, or in any other manner DO NOT create or constitute a doctor-patient or attorney-client relationship between you  and the Global Down Syndrome Foundation (Global), or any employee of, or other person associated with, Global.

Information received from Global’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. Globaldownsyndrome.org DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.

Funding Increases for the National Institutes of Health (NIH) and Down Syndrome Research Lauded by Global Down Syndrome Foundation

Photo by Marleen Van den Neste

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

December 22, 2019, Denver, CO– On Friday, President Trump signed a $1.4 trillion spending package that will fund the government until September 2020 and averted a government shutdown. Earlier in the week, the package passed the House and Senate with victories and compromises on both sides of the aisle.

“Finally, we have secured the funds and resources for our military — our national security,” said Senator Richard Shelby (R-AL), Chairman of the Senate Appropriations Committee who also heads the appropriations subcommittee on defense. “This package includes a significant increase in defense funding and the largest pay raise in a decade for our men and women in uniform.”

Chairwoman of the House Appropriations Committee Nita Lowey was also pleased with the results, “I am particularly proud that House Democrats prevailed in securing historic investments For the People, including record funding levels for Head Start and lifesaving medical research at NIH, and in funding priorities vital to our shared security, like gun violence prevention research and election security grants to states.”

Included in the spending package was legislation providing a 7% increase or $2.6 billion more funding to the NIH for an annualized budget of $41.7 billion. Legislation also highlights a “minimum” of $60 million for Down syndrome research in FY2020 through NIH’s Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome (INCLUDE) trans-NIH project. This would bring total Down syndrome research funding up to $98 million for the year.

Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation, issued the following statement:

“Global thanks the Administration, our champions in Congress, and leadership at NIH who made Down syndrome research and medical care a priority resulting in the NIH INCLUDE project. It is important to note that this result reflects a decade of hard work and two decades of inequity in funding for our Down syndrome community.

The key turning point was the Labor, Health and Human Services, Education and Related Agencies House Appropriations Subcommittee hearing on Down syndrome research in October 2017. At the hearing, testimony from Global Ambassador, Frank Stephens, received a standing ovation, 100% bipartisan support, and over 150 million views on C-Span and other outlets.

This first ever hearing of its kind and testimonies were made possible by Congresswoman Cathy McMorris Rodgers, Chairwoman Rosa DeLauro, and Ranking Member Tom Cole with further support from Senators Roy Blunt, Patty Murray, and so many others from both sides of the aisle.

The FY2020 budget for NIH and Down syndrome research signals a clear message that the longevity and improved health outcomes of people with Down syndrome is important, and that their unique disease experience can also benefit others without Down syndrome. Global is proud and incredibly grateful to have worked with the Administration, NIH, and Congress to secure the funding for this research.”

The INCLUDE project focuses on diseases and conditions like Alzheimer’s, blood cancers, and autoimmune disorders that have a higher prevalence among individuals with an extra copy of chromosome 21 as well as conditions like solid tumor cancers that are rare among individuals with Down syndrome. The INCLUDE Steering Committee is chaired by Dr. Lawrence Tabak, NIH Principal Deputy Director in partnership with Dr. Diana Bianchi, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and Dr. Gary Gibbons, Director, National Heart, Lung, and Blood Institute (NHLBI) as co-chairs.

To learn more about the NIH INCLUDE project, visit https://www.nih.gov/include-project/include-project-research-plan#leadership

To learn more about the Crnic Institute for Down Syndrome, visit https://medschool.cuanschutz.edu/linda-crnic-institute

To learn more about the Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation is at the forefront of Research, Medical Care, Education, and Advocacy dedicated to significantly improving the lives of people with Down syndrome. Global supports the research of hundreds of scientists around the world through their advocates, partners and affiliates, including the Crnic Institute for Down Syndrome, the Rocky Mountain Alzheimer’s Disease Center, the Anna and John J. Sie Center for Down Syndrome, and a new pilot Adult Clinic. Global invites its supporters to celebrate over a decade of milestones in helping people with Down syndrome at their Be Beautiful Be Yourself Fashion Show. To learn more, please visit www.globaldownsyndrome.org and www.bebeautifulbeyourself.org.

Global Webinar Series – Winter 2019 Recap

December 16th, 2019 by Global Down Syndrome Foundation

WINTER 2019

CPAP, Hearing Aids, & Glasses, Oh My! How to Help my Child & Adult Wear their Medical Equipment


What You Need to Know


Overview & Speakers:

This webinar will explain the frequency of diagnoses and importance of adherence to help your child and/or adult wear their medical equipment. Key takeaways include:

Common types of challenging behaviors that children and adults with Down syndrome may have when working to wear medical equipment

A step-by-step plan for increasing use of medical equipment

Motivators for avoiding wearing medical equipment and how to manage these behaviors

Lina Patel, PsyD

Lina Patel, PsyD joined the Sie Center for Down Syndrome at Children’s Hospital Colorado as Director of Psychology in November of 2012. She has extensive experience in treatment planning, parent support, diagnostic evaluation, and intervention. As she believes that behavioral challenges arise for many different reasons, she prides herself in coordination of care with community providers, educational supports, medical team members, and caregivers. Additionally, she conducts clinical research to better understand how neurodevelopment impacts behaviors.

Overview: Click to Listen


Powerpoint Presentation: Click to Download


Additional Handout: Click to Download


Questions & Answers: Coming Soon!


Important Notice

The Global Down Syndrome Foundation’s employees and/or volunteers are NOT acting as your medical professional or attorney. Responses you receive via electronic mail, phone, or in any other manner DO NOT create or constitute a doctor-patient or attorney-client relationship between you  and the Global Down Syndrome Foundation (Global), or any employee of, or other person associated with, Global.

Information received from Global’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. Globaldownsyndrome.org DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.

Born This Way

December 5th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 3 of 4

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


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

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

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

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

A TV STAR IS BORN

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

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

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

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

THE NEXT CHAPTER

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

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

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

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

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

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

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

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

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

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


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

Be Beautiful Be Yourself Models Press

December 4th, 2019 by Global Down Syndrome Foundation


Models In the News:


Megan Bomgaars

Archie Eicher

Sevy Eicher


Charlotte Fonfara-LaRose

Courtney Gaines

Allison McCollam

Featured Articles:


Supermodel Amanda Booth & Actress Megan Bomgaars to Receive Prestigious Global Down Syndrome Foundation
“Quincy Jones Award”

Supermodel Amanda Booth & Actress Megan Bomgaars to Receive Prestigious Global Down Syndrome Foundation
“Quincy Jones Award”

Supermodel Amanda Booth & Actress Megan Bomgaars to Receive Prestigious Global Down Syndrome Foundation
“Quincy Jones Award”

Courtney Gains: Advocate for
Down Syndrome Awareness

Choctaw teen becomes first to represent
Oklahoma in international Down Syndrome fashion show

Adopted Conroe siblings to rock runway
for Down syndrome”

Ariana Perez: Annapolis teen is ambassador at Global Down Syndrome
Be Beautiful Be Yourself Fashion Show

Choctaw Student With Down Syndrome Is First To Represent Oklahoma In
Fashion Show

Katy Teen with Down Syndrome Helps Raise $2.5M on Fashion Show Runway

Shop to Support Global!

December 1st, 2019 by Global Down Syndrome Foundation

Great news for holiday online shoppers! When you buy anything on Amazon, a portion of your purchase price will be donated to Global Down Syndrome Foundation!

Simply start your shopping through this link to AmazonSmile. There is no difference in prices or in products and it’s easy!

Thank you for your continued support of Global Down Syndrome Foundation. We wish you a wonderful holiday season!

Global Honors Supermodel Amanda Booth with Quincy Jones Exceptional Advocacy Award

November 15th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 3 of 4

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


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

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

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

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

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

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

A PERSONAL JOURNEY OF LIFE, LOVE & ACTIVISM

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

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

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

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

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

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

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

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

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

Amanda says their advocacy work happened very organically.

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

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

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

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

CONNECTING WITH GLOBAL

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

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

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

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

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

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

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

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

WHAT’S NEXT?

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

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

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


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At Global’s 11th annual Be Beautiful Be Yourself Fashion Show, a surprise announcement was made by Noreen Salah Burpee, Executive Director of the Salah Foundation, and delivered by 9News emcees Kim Christiansen and Tom Green. The Salah Foundation matched $75,000 during the live auction that will go to a much-needed Computer Training Class at Global’s new Education Center that was made possible by a transformative $1 million gift from Salah Foundation in 2017.