Archive for 2020

December 2020 Newsletter

December 17th, 2020 by Global Down Syndrome Foundation

Make this December Count!

group of people in Masks on a catwalk

The unprecedented virtual event was an overwhelming success which raised $1.9 million for
life-saving and transformative funds for Down syndrome research and medical care

Press Contacts:

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

 

DENVER, CO – November 19, 2020– This weekend, the Global Down Syndrome Foundation (GLOBAL) went virtual for the first time ever and raised over $1.9 million. Now in its 12th year, GLOBAL’s Be Beautiful Be Yourself Fashion Show is the largest fundraiser for Down syndrome in the world and has raised a cumulative $22 million.

Held virtually on Saturday, November 14, the Be Beautiful Be Yourself Fashion Show was a tremendous success. 2020 GLOBAL Ambassador Walt Snodgrass; Music Legend Quincy Jones; supermodels Beverly Johnson and Amanda Booth; award-winning actors John C. McGinley, brothers Matt Dillon and Kevin Dillon, Jeff Probst, Eric Dane, Zack Gottsagen, Jamie Brewer, Megan Bomgaars, Kevin Quinn (appearance arranged by Gotham Artists); Denver Broncos Von Miller, Brandon McManus, Justin Simmons, Jake Butt; Golfer Brad Hennefer; R&B power couple Ronnie & Shamari DeVoe; award-winning journalists Kyra Phillips and John Roberts; musician Sujeet Desai and more, were among those who rocked the virtual runway, which featured <href=”https://bebeautifulbeyourself.org/2020-models/”>25 beautiful models from 8 states and 3 countries who were introduced by their celebrity escorts. The show’s virtual format provided an extraordinary opportunity for people from across the U.S., and the world, to tune-in and join this inspirational and star-studded event. Full list of celebrity line-up: HERE

“It was an honor to emcee the event this year, and to see how all the pieces came together so magically,” says John C. McGinley, who is a GLOBAL board member and international spokesperson, and father to Max, who has Down syndrome. “It truly was the virtual event of the year!”

“We are so grateful to John C. McGinley, our models, celebrities, and donors that helped make our first virtual event a success,” says Michelle Sie Whitten, GLOBAL’s President and CEO. “With COVID we have had such a tough year working to protect people with Down syndrome who are high risk from the virus, and to help families who have been crushed by the economic impact. Despite all that, GLOBAL was still able to deliver on publishing the first medical care guidelines for adults with Down syndrome, advocate for increased NIH research funding, and support over 2,000 patients with Down syndrome. Sadly, this year we also tragically lost our GLOBAL Ambassador DeOndra Dixon so we’re navigating a lot of loss.”

Later in the evening the legendary music icon Quincy Jones presented his namesake awards, the Quincy Jones Exceptional Advocacy Awards, to this year’s winners, award-winning actress and Grey’s Anatomy star Caterina Scorsone and Spanish model Marián Ávila.

“Modeling, walking a runway, and being featured in advertising campaigns is important to me,” says Marián Ávila, who has modeled in New York Fashion Week and has been profiled in international publications including Vanity Fair. “It makes me feel self-assured and happy. And it is a platform for diversity and equity for people with Down syndrome and all people. I am so honored to receive this award – GLOBAL truly allows the world to see us, hear us, and respect us.”

The show paid a loving tribute to the late DeOndra Dixon who is the inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award. DeOndra tragically passed away last month. Music legend Quincy Jones himself introduced GLOBAL to DeOndra as one of the most articulate, irrepressible, magnetic people he had ever met. GLOBAL and DeOndra’s family have set up the “DeOndra Dixon Down Syndrome Research Fund” to focus on the often-neglected population of African Americans with Down syndrome. Anna and John J. Sie are generously matching $100K for this important research. See full tribute: HERE

“It means so much to our family to see DeOndra’s legacy make a difference for GLOBAL and the Down syndrome community that she inspired,” says Mr. George Dixon, DeOndra’s father. “DeOndra was an angel and a star. I know she is looking down on us, loving on us and watching over us. She is our angel.”

“DeOndra’s fund is so important to the Down syndrome community, especially the African American community. It will give us opportunities to better understand and correct the health disparities for African Americans with Down syndrome,” says Beverly Johnson, a GLOBAL international spokesperson and aunt to Natalie Fuller, a GLOBAL model who happens to have Down syndrome.

Another highlight of the evening were the heartfelt performances honoring those in the Down syndrome community who have battled COVID-19. The Fray’s Isaac Slade gave an exclusive performance of “How to Save a Life,” and Multiplatinum Artist Rachel Platten performed her iconic “Fight Song” and “Better Place,” which left the audience on their feet from the comfort of their own homes. The Ransom Notes shared their wonderful Folk-Americana-Bluegrass music all the way from Nashville and had everyone clapping. To end the evening, Multi-platinum artist and actor Phillip Phillips performed a heartfelt tribute in honor of DeOndra Dixon with a beautiful rendition of “Gone, Gone, Gone.” Rachel Platten and Phillip Phillips’ appearances were arranged through Gotham Artists.

Lou III and Jill Rotella from Omaha chaired the 2020 event – GLOBAL’s first virtual Be Beautiful Be Yourself Fashion Show. Past event chairs include Kacey Bingham and Brittany Bowlen, Peter Kudla, Anna and John J. Sie, Sharon Magness Blake and Ernie Blake, Ricki Rest, Nancy Sevo and Michelle and Tom Whitten. Other notables in attendance included past Global Ambassadors Chase Turner Perry, Kate Winfield, Sam Levin, Sophia Kay Whitten, Louis Rotella IV, Marcus Sikora, and Clarissa Capuano; and past Q-Award winners Tim Harris, Megan Bomgaars, Zack Gottsagen, Karen Gaffney, Sujeet Desai, Brad Hennefer, Jamie Brewer, and Frank Stephens.

Proceeds from GLOBAL’s Be Beautiful Be Yourself Fashion Show help underwrite life-changing and life-saving research and medical care at GLOBAL’s affiliates – the Crnic Institute for Down Syndrome, CU Alzheimer’s and Cognition Center, and the Sie Center for Down Syndrome at Children’s Hospital Colorado, all at the University of Colorado Anschutz Medical Campus.

“We are proud of all the important work we’ve been able to accomplish this year, including receiving NIH grants to study COVID-19 and Down syndrome and launching a clinical trial that aims to cure autoimmune disorders in people with Down syndrome,” says Dr. Joaquin Espinosa, Executive Director of the Crnic Institute. “We couldn’t do any of this without GLOBAL’s support and events like our fashion show help underwrite our Crnic Grant Challenge Grants and important advocacy work.”

The fashion show would not be possible without the generosity of GLOBAL’s Leadership Circle, sponsors, Ambassadors, Q-Awardees, models, Down syndrome partner organizations, celebrities, self-advocates and families.

To continue the work and fight for the down syndrome community, GLOBAL created a Q&A on COVID-19/Down syndrome, provided over 140 families and 42 Down syndrome organizations with COVID-19 Emergency Relief Global Grants, and supported legislation that fights discrimination against those with disabilities during crisis triage care situations.


Missed the event? It’s not too late to get involved! See highlights from the show .

To learn more about the Be Beautiful Be Yourself Fashion Show or to donate, visit www.bebeautifulbeyourself.org

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


About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

Global Down Syndrome Foundation Moves Fundraiser Online

November 19th, 2020 by Global Down Syndrome Foundation

Pursuing Your Passions

November 17th, 2020 by Global Down Syndrome Foundation

PURSUING YOUR PASSIONS

From Down Syndrome WorldTM 2020 Issue 2 of 4

FROM OWNING A RESTAURANT TO RUNNING A FOUNDATION, TIM HARRIS IS ON A MISSION. THE DEDICATED GO-GETTER FINDS NEW INSPIRATION AFTER MEETING R&B POWER COUPLE SHAMARI & RONNIE DEVOE AT GLOBAL’S FASHION SHOW.

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!

“IF YOU CAN DREAM IT, YOU CAN DO IT,” Tim Harris, the vibrant 34-year-old from Albuquerque, New Mexico, says with a smile. “That famous Walt Disney quote has led me through my life.”

From the time Tim was a kid, he dreamed of owning a restaurant. After graduating college, he made that dream a reality and opened “Tim’s Place” in 2010. The restaurant served classic American and New Mexican dishes but was more well-known for Tim’s world-famous hugs. Tim became the first person with Down syndrome in the United States to own and operate his own restaurant. The restaurant attracted celebrities like Paul Bettany, Jennifer Connelly, Aloe Blacc, J.R.R. Martin, and Mel Gibson, parents of newborns with Down syndrome, and national media outlets. Tim was also featured in People Magazine, CBS Evening News and CBS Sunday Morning, America Online, ABC News, NBC Today Show, NBC Nightly News, National Public Radio, and CNN News.

After an impressive 75,402 hugs over 5 years, Tim and his family decided to close Tim’s Place. Seeking to expand his impact, he started Tim’s Big Heart Enterprises in 2016, hosting charity events such as the Hug-A-Thon for the local fire department. Now, Tim spends his time traveling the world, advocating for those with Down syndrome, and giving motivational speeches. Tim is also a recipient of the Quincy Jones Exceptional Advocacy Award, the prestigious honor given by the Global Down Syndrome Foundation (GLOBAL).
At GLOBAL’s 2019 Be Beautiful Be Yourself Fashion Show, Tim had the pleasure of watching his girlfriend Megan Bomgaars accept the same award. “Megan asked me to escort her on the red carpet, and it felt awesome having reporters ask us about our advocacy together. I loved it,” Tim explains.

That night at the Fashion Show, Tim met Shamari and Ronnie DeVoe, who are known as a power couple in the music industry. Shamari is a platinum artist and actress, best known for her role on the Real Housewives of Atlanta. Ronnie is also a platinum selling artist, best known for being in the bands New Edition and Bell Biv DeVoe as well as his off-stage career in real estate.

“We learned about GLOBAL and the Be Beautiful Be Yourself Fashion Show from our friends Jamie and DeOndra,” says Shamari. “The Fashion Show was a perfect way to combine our passions for music, helping others, spending time with friends and making new ones
all in one night.”

“Jamie Foxx and his sister DeOndra Dixon are long-time GLOBAL supporters and an iconic sibling duo. Seeing them at GLOBAL events over the years and meeting a successful power couple like Shamari and Ronnie was inspiring,” says Tim. “I thought, hey look at all Megan and I have accomplished on our own, I wonder what we could accomplish together! TiMeg? BomHarris? We’ll need to work on that.”

From a Solo Force to Power Couple
“The most important thing we’ve learned about being a success- ful couple, both professionally and personally, is to be a strong individual in both areas first,” says Ronnie. “Shamari and I developed ourselves and our careers years before even meeting each other. When we met, we combined our talents and became even stronger together.”

Ronnie grew up in Boston, Massachusetts and was always interested in the entertainment industry. In 1980, Ronnie’s uncle Brooke Payne introduced him to the guys in New Edition after they won a chance to record a song with Maurice Starr, a well-known pop and soul music producer. He auditioned to become the 5th member and three years later, they released their first record, Candy Girl. New Edition broke up in 1989. After that, Ronnie, Ricky Bell, and Michael Bivins founded Bell Biv DeVoe. “Their debut album, Poison, sold more than 5 million copies and garnered 5 hit singles including the timeless classic, Poison.” New Edition reunited in 1996 with the #1 album Home Again. Since then, NE and BBD have received all kinds of accolades, lifetime achievement awards, and even produced a record-breaking movie about their journey in the music business. BBD’s most recent album was released in 2017 and the group continues to tour around the world.

Shamari grew up in Atlanta, Georgia and started singing when she was just 3 years old. At 17, she landed her first record deal on the multi-platinum group Blaque, with Lisa Lopes. In 1999, the group won “Best New Artist” by Billboard for their debut album, which sold over one million copies. In addition to her music career, Shamari has appeared in the movies Bring it On and Honey, and TV shows V.I.P. and Bravo TV’s Real Housewives of Atlanta.

In 2001, Ronnie and Shamari met at the after party for the MTV Icon Awards honoring Janet Jackson in Los Angeles. From that day on, they were inseparable. Their involvement in the music industry helped connect them and strengthen their relationship over the years. “We share the same love for traveling and inspiring people through our music and performances,” says Ronnie. The couple was married in 2006, and in 2017, they welcomed twin boys, Ronald and Roman. Ronnie and Shamari began to collaborate on music together and in 2018, they released Love Comes Through, their first song together.

When Tim met Shamari and Ronnie, they got along right away. “They were so fun to be around and easy to talk to,” he remembers. And the feeling was mutual. “Tim is an amazing individual with loads of energy, ambition, and laughter,” says Shamari. “His spirit and personality were infectious. He made us feel right at home. I can see why his restaurant was so successful.”

Tim and Megan had a similar journey of individual growth before they met. Tim attended Eastern New Mexico University and graduated in 2008 with certificates in restaurant management. His restaurant, “Tim’s Place,” became famous for being the “friendliest restaurant” in the country and he was invited to be a keynote speaker for and received awards from dozens of organizations including Keller Williams International, Clay Aikin’s National Inclusion Project, Children’s Miracle Network, The NYC Welcome Conference, National Down Syndrome Congress, Special Olympics International, Kiwanis International, Civitan International , and many more. Additionally, Tim’s foundation has successfully raised thousands of dollars for organizations in his local community.
“Tim brings such joy to everyone around him,” says his mother, Jeannie. “He’s always been a big hugger. He makes everyone feel loved and celebrated.”

“His happy attitude brings him from one adventure to the next,” his father Keith adds. “If one door closes, he won’t spend too long dwelling on it, he’ll just move on to the next thing. And that’s what allows him to accomplish so much.”

Regularly attendees of GLOBAL events, Tim met Megan at one of GLOBAL’s “must-attend” quarterly I Love You Dance Parties, where Megan was being followed by a camera crew for the Emmy-award winning Born this Way. Not intimidated, Tim began to court Megan, they got to know each other as friends, and eventually started dating. But continue to prioritize their careers along the way. After several months of dating, at GLOBAL’s 2019 Fashion Show, Tim made their relationship public and official. “I gave her a special necklace, and she kept it!”

Megan is a businesswoman in her own right. Her student video about inclusive learning environments, where she coined her catch phrase “Don’t Limit Me” went viral in 2013. She was later recruited to be cast on A&E’s Emmy Award winning show Born This Way. Additionally, Megan is an entrepreneur, opening her own clothing line in partnership with Sanrio’s Hello Kitty and “Don’t Limit Me” makeup line in collaboration with Artpop Cosmetics.

“It was so heartwarming to see how supportive and encouraging Megan and Tim are to each other,” says Shamari. “Tim gave Megan her spotlight as the 2019 Quincy Jones Award winner, and Megan was proud to show Tim off.”

When Tim asked Ronnie and Shamari what their biggest lesson as a couple is, Ronnie said, “When we put our mind, focus, and attention on something we are passionate about, it will manifest positive results. And that applies to not only relationships, but just about everything in your life.”

Shamari and Ronnie were eager to hear about Tim’s and Megan’s business endeavors. “They both have such a thirst for advocacy. They want to change the world,” Shamari explains. “And putting their heads and hearts together, I can’t wait to see how they grow.”

WHEN STARS SHINE

“Our first GLOBAL Fashion Show was beyond amazing, an A+ operation all around. Michelle, Sophia, the Sie family, and the GLOBAL staff were all so accommodating and gracious,” says Ronnie. “It was truly moving to see how much they care and how dedicated they are to making sure that people with Down syndrome get a voice and their fair share of research funding.”

Shamari and Ronnie walked down the GLOBAL runway with Piper and Jacob. “Piper was such a princess. She was quiet, but observant. And she had the most beautiful smile!” Shamari tells. “And Jacob had so much energy and excitement for life. He was a ball of joy wrapped up in a tiny package full of love!”

“Once they gave us the greenlight to go, both Piper and Jacob exploded down the runway like they owned the place,” Ronnie adds. They loved it so much, they are attending as celebrity guests again this year for the virtual event!

“I was happy just watching Megan do her thing from the audience,” says Tim. “I remember what it was like being on that stage 6 years ago accepting my award, and this was her turn. We’re each other’s rock.”

“Getting the Q-Award at GLOBAL’s Fashion Show was one of the biggest honors of my life,” said Megan, “It felt amazing to be recognized for my work on such a large scale and have my mom and boyfriend there supporting me. Seeing all 1,400 people in the room learning about Down syndrome and raising more money for research with Michelle was a dream come true and I would want to do it again.”

The event ended with an impromptu after-party concert led by Jamie Foxx. Later, Ronnie joined in and the two sang together. “Jamie saw me, nodded to the DJ, and we sang a few Bell Biv DeVoe/New Edition songs together,” Ronnie tells. “It was a great crowd, with so much enthusiasm and energy. It felt so organic. And I remember Megan Bomgaars dancing and singing harder and better than Jamie and myself combined!”

“GLOBAL’s Fashion Show is always full of exciting and unforgettable moments, and in my 11 years running this event, that after-party show has to be one of my favorites memories of all time!” says Michelle Sie Whitten, GLOBAL President and CEO. “Our celebrities and self-advocates danced and sung their hearts out, and everyone let loose.”

GIVING BACK

“It’s only right that we assist one another and continue to serve our purpose in life, which is to use our gifts, talents, resources, influence, time and energy to be a blessing to others,” says Ronnie. “Considering Down syndrome is the one of the least funded genetic condition by our federal government, the money raised at this event is necessary for research andoverall understanding.”

“Without Michelle and her team, who knows where we would be in the fight to help the lives of men, women, and children with Down syndrome,” Shamari adds.

This year, due to the unprecedented COVID-19 pandemic, GLOBAL has shifted priorities to best provide for the Down syndrome community. “Unfortunately, our Down syndrome community is high-risk for COVID-19, so we’ve done everything we can to serve our families, including creating a Down syndrome/COVID-19 Q&A, advocating for important legislation, and providing emergency relief grants to over 140 families and 42 member organizations,” says Michelle.

GLOBAL has had to cancel or postpone many fundraising events and is facing financial challenges. For GLOBAL’s 2020 Be Beautiful Be Yourself Fashion Show, the event will go virtual for the first time. Fortunately, celebrities including Jamie Foxx, DeOndra Dixon, Shamari and Ronnie DeVoe, Tim Harris and Megan Bomgaars will be showing up in full force to support GLOBAL’s important work.

“I can’t wait to reconnect with my friends Shamari and Ronnie this year, even if it is virtual!” Tim exclaims. “I’ve seen them rock a place, and I’m sure they’ll do it again. But the real question is, are they ready for what I have in store?”


To learn more about GLOBAL’s Be Beautiful Be Yourself Fashion Show, visit www.bebeautifulbeyourself.org

To learn more about Tim’s Foundation, visit www.timsbigheartenterprises.com


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November 2020 Newsletter

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A November Worth Remembering

Global Down Syndrome Foundation Moves Fundraiser Online

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Jamie Foxx and Family Create Foundation in Honor of Late Sister DeOndra Dixon

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