FALL 2019

---

Overview & Speakers:

This webinar discusses the importance of utilizing the American Academy of Pediatrics Guidelines Health Supervision of patients with Down Syndrome, published in 2011. Find out what families need to know. Key takeaways from this presentation are:

• To better comprehend the utilization of the Guidelines in medical care of our kids

• To recognize the importance of ongoing thyroid, hearing and vision

• To understand the increased risk of respiratory illnesses including pulmonary illnesses, pneumonia, and aspiration in individuals with Down Syndrome

Francis Hickey, MD

Fran Hickey, MD joined the Linda Crnic Institute for Down Syndrome as Medical Director of its Anna and John J. Sie Center for Down Syndrome in 2010 and he has been involved in the care of individuals with Down syndrome for over 2 decades. Since 2010, Dr. Hickey has organized a multi-disciplinary team of experts interested in children with Down syndrome along with a dedicated research team. He has evaluated nearly 1800 unique individuals with Down Syndrome from across the country and internationally the past 9 years. Sie Center clinics developed include: General Clinics, Infant Clinic, Feeding Clinic, School Age Clinic, Prenatal Clinic, and 2 Sleep Clinics. His research has concentrated on clinical studies involving identification and interventions for comorbidities found in children with Down syndrome. Dr. Hickey has directed over 30 research projects. He has authored or co-authored 30 articles in scholarly publications on Down syndrome. Also, he has developed an academic teaching program on Down syndrome for residents, medical students and fellows who have rotated through the Sie Center clinic. The team developed an innovative Down Syndrome Guideline Chart 1-page summary chart of AAP Guidelines Health Supervision of Down Syndrome Patients. Dr. Hickey and his wife, Kris, are the parents of four children, one of whom has Down syndrome.

Powerpoint Presentation: Click to Download

Additional Handout: 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.

Shia LaBeouf has a message for YOU! Shia’s breakout film, The Peanut Butter Falcon, co-starring Global’s Quincy Jones Exceptional Advocacy Award winner, Zack Gottsagen, is now the most successful indie film of the year! Last year at Global’s Be Beautiful Be Yourself Fashion Show, co-stars Shia and Dakota Johnson danced on stage with Zack as he accepted his award with celebratory roars from Armory Films producers and writers/directors Tyler and Michael below in the audience.

Zack and his crew had planned to attend this year but we are thrilled to announce they cannot – BECAUSE (wait for it) – Zack’s performance in The Peanut Butter Falcon has earned Oscar buzz and the entire crew needs to be in LA so that Zack can be the FIRST (but not last) actor with Down syndrome to be nominated for an Academy Award!

Global is a proud executive producer of the film, and wants more actors with Down syndrome in Hollywood! Please join us in our fight for health and research equity for people with Down syndrome at the LARGEST fundraiser for Down syndrome in the world! Learn more here: www.bebeautifulbeyourself.org

To learn more about Peanut Butter Falcon click here.

Celebrities vow to raise awareness and funds for life-saving and transformative medical care & research at Global’s Be Beautiful Be Yourself Fashion Show

Top Row (L-R): Quincy Jones, Henry Winkler, Laura Linney, Terrell Davis, Charlotte Fonfarra-LaRose; Bottom Row (L-R): Eric Dane, Shamari and Ronnie Devoe, John C. McGinley, Amanda Booth, Megan Bomgaars

Press Contacts:
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832

Denver, CO (October 22, 2019) – Today the Global Down Syndrome Foundation (Global) announced Emmy Award-winning actor, producer, and director Henry Winkler; Academy Award-nominated and award-winning television and film actress Laura Linney; NFL Hall of Famer Terrell Davis, and R&B royalty and husband-wife dream team Shamari and Ronnie DeVoe will join its celebrity lineup for the 11th annual Be Beautiful Be Yourself Fashion Show at the Sheraton Denver Downtown Hotel, 1550 Court Place, on Saturday, November 2. The marquee event is the largest Down syndrome fundraiser in the world.

Winkler, Linney, Davis, and the DeVoes will join Global in honoring their 2019 Quincy Jones Exceptional Advocacy Award (Q-Award) winners and stars, Amanda Booth and Megan Bomgaars. Both women are passionate advocates for the differently-abled community, and Megan herself has Down syndrome.

Other confirmed celebrities for the Be Beautiful Be Yourself Fashion Show include: music legend and inspiration behind the Q-Award, Quincy Jones; Global board member and award-winning actor John C. McGinley; award-winning actor Eric Dane; Q-Award winner DeOndra Dixon; U.S. Squad World Cup team member and Colorado Rapids player Kellyn Acosta; supermodel and Instagram influencer Mikaela Hoover; 2019 Miss Colorado Monica Thompson; and Denver Broncos cheerleaders Jozie, McKenna, and more.

Twenty-three models with Down syndrome from around the world, traveling from as far as India and London, will rock the runway with celebrity escorts. At the event, Global will also honor the 2019 Be Beautiful Be Yourself Ambassador Charlotte Fonfara-LaRose, while celebrating the return of past Ambassadors and Q-Award winners: DeOndra Dixon and Clarissa Capuano.

For over a decade Global has funded transformative and life-saving research and medical care through its affiliates – the Linda Crnic Institute for Down Syndrome and the Rocky Mountain Alzheimer’s Disease Center both at University of Colorado Anschutz Medical Campus, and the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

Since Down syndrome is one of the least funded genetic conditions by the National Institutes of Health (NIH), Global depends on fundraising events to underwrite important work. This work includes Global’s lobbying Congress and outreach to NIH which has resulted in nearly a tripling of the NIH Down syndrome research budget – from $27 million in 2016 to $77 million in 2019.

“We are excited to share that Global’s unabating and difficult work in Washington, D.C. continues to succeed with the promise of elongating life and dramatically improving health outcomes for people with Down syndrome,” says Global President and CEO, Michelle Sie Whitten. “This wouldn’t be possible without the funds raised at the Be Beautiful Be Yourself Fashion Show and the support of our amazing donors, dedicated Congressional and NIH Champions, passionate self-advocate and families, and our brilliant researchers and medical professionals.”

Various levels of Be Beautiful Be Yourself Fashion Show tickets, table sponsorships, and model sponsorships are available, including VIP levels at www.bebeautifulbeyourself.org.

About Global Down Syndrome Foundation

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

They’ll Be There Sat. Nov 2nd! Will You?

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

Global Celeb Lineup Amanda Booth, Charlotte Fonfara-LaRose, Mikaela Hoover, Megan Bomgaars

Press Contacts:
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832

Denver, CO (September 18, 2019) – Today, the Global Down Syndrome Foundation (“Global”) announced supermodel and actress Amanda Booth and TV star and entrepreneur Megan Bomgaars will receive Global’s Quincy Jones Exceptional Advocacy Award (“Q Award”), as well as its initial celebrity lineup for the Be Beautiful Be Yourself Fashion Show. The marquee event is the largest Down syndrome fundraiser in the world, raising over $18 million for life-saving and life-changing research and medical care to date. An estimated fourteen hundred attendees including models with Down syndrome, Hollywood and sports celebrities, philanthropists, and government officials will head to the Sheraton Denver Downtown Hotel, 1550 Court Place in Denver on Saturday, November 2.

Booth has worked on fashion editorials and advertising campaigns for Harper’s Bazaar US and Australia, Glamour Magazine UK, Elle, Anthropologie and more. Booth uses her fashion platform in top publications and on social media to support Global’s important work and to share her journey of parenting a beautiful son who happens to have Down syndrome. Recently, Booth and her son appeared on the cover of Vogue Living Netherlands, making Micah the first person with Down syndrome to be featured on a Vogue magazine cover.

Bomgaars, a woman with Down syndrome herself, regularly represents Global at conferences and events, including this year’s Trisomy 21 Research Society International Conference in Barcelona, Spain and the National Down Syndrome Congress Annual Convention in Pittsburgh, Pennsylvania. An inspiration to everyone to follow their dreams, the 26-year-old has starred in the four-time Emmy Award-winning television series Born this Way, was selected by the White House to attend former first lady Michelle Obama’s Beating the Odds summit, and has developed a clothing line and a makeup line with Sanrio’s “Hello Kitty” and ArtPop Cosmetics respectively.

Other confirmed celebrities for the Be Beautiful Be Yourself Fashion Show include: Music Legend and inspiration behind the Q Award, Quincy Jones, Global board member and award-winning actor John C. McGinley, award-winning actor Eric Dane, supermodel and Instagram influencer Mikaela Hoover and award-winning actor from the breakout indie film The Peanut Butter Falcon, Zack Gottsagen. A full roster of celebrities will be announced in the coming weeks.

During the fashion show, 23 brilliant and beautiful models with Down syndrome will rock the runway. The event will also honor the 2019 Global Ambassador Charlotte Fonfara-LaRose, while celebrating the return of past Ambassadors and Q-Award winners: DeOndra Dixon, Zack Gottsagen, and Clarissa Capuano.

“We are proud of our accomplishments and we are deeply grateful for the support we receive from our amazing families, congressional champions, the National Institutes of Health, and professionals who empower us to save and transform the lives of people with Down syndrome every day,” said Michelle Sie Whitten, President, CEO and Co-Founder of the Global Down Syndrome Foundation. “The proceeds from this spectacular event help fund over 200 scientists working on elongating life, and a dream team of medical professionals providing excellent medical care to over 1,700 patients from 28 states and 10 countries.”

Global’s advocacy and lobbying efforts with Congress and outreach to the National Institutes of Health (NIH) have resulted in an unprecedented increase of the Down syndrome research budget, from $27 million in 2016 to an estimated $77 million in 2019.

About Global Down Syndrome Foundation

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