Archive for 2020

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 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).

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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11.14.20CTRNASCSNETCAN

November 14th, 2020 by Global Down Syndrome Foundation

Exclusive Coverage on ET Canada

NIH Award Funds Data Coordinating Center
for Down Syndrome Research

November 9th, 2020 by Global Down Syndrome Foundation

Scientists in lab, one holding a beaker

The new initiative will fuel collaboration and discovery about the biology of Down syndrome and its co-occurring medical conditions

Press Contacts:

Amanda Hilll Linda Crnic Institute for Down Syndrome | amanda.a.hill@cuanschutz.edu | C: 303.724.9907
Bobby Moulder Center for Data Driven Discovery in Biomedicine | moulderr@email.chop.edu | C: 484.258.8539
Hsiao-Ching Chou Sage Bionetworks | chou@sagebionetworks.org | C: 206.696.3663

DENVER, CO November 5, 2020 Scientists and data experts are joining forces to create the world’s first centralized platform for Down syndrome researchers to share, access, and analyze data. The goal of the new initiative, called the “Data Management and Portal for INCLUDE (DAPI) Project,” is to accelerate discoveries and advance medical care for individuals with Down syndrome. The National Institutes of Health (NIH) recently awarded a grant totaling $19.5M over five years to develop the center as part of the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE).

The DAPI Project is co-led by Dr. Adam Resnick, Director of the Center for Data Driven Discovery for Biomedicine (D3b) at Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus, and Dr. Justin Guinney, Vice President of Computational Oncology at Sage Bionetworks. DAPI Project leaders will work closely with NIH INCLUDE Project staff to develop the center. This collaboration brings together strong expertise in Down syndrome research and open, data-driven science.

“We expect this new data center will be an impactful resource for the INCLUDE Project and the larger Down syndrome research community,” said Dr. Charlene Schramm, NIH Program Officer for the award. “The goal is to create a world-class portal for data sharing and analysis that will encourage innovative investigations into Down syndrome comorbidities across the lifespan.”

Dr. Melissa Parisi, one of the leaders of the NIH INCLUDE Project, added “The DAPI Project will combine data from existing research cohorts of individuals with Down syndrome with new cohorts. By building common data and shared analytic platforms, this project hopes to create a rich resource to help advance our understanding of these co-occurring conditions and support future therapeutic development.”

The INCLUDE Project is a trans-NIH initiative launched in 2018 to support research into conditions that affect individuals with Down syndrome and the general population. More than six million individuals living with Down syndrome have an increased risk of developing a wide range of medical conditions, such as certain autoimmune disorders and Alzheimer’s disease. At the same time, they are protected from some of the largest killers of the general population, including solid cancers and certain heart disease. Therefore, a key goal of the INCLUDE Project is to decode the underlying biology that alters these and many other co-occurring medical conditions in individuals with Down syndrome.

“Coordinated discovery efforts in this population not only have the potential to directly improve the lives of individuals with Down syndrome, but also to impact millions of other people affected by numerous related and co-occurring conditions,” said Dr. Espinosa of the Crnic Institute.

To enable these investigations, the mission of the DAPI Project is to create a world class platform for data sharing, data access, and integrative analysis in Down syndrome. The platform will empower scientists, physicians, and the community with tools to elicit evidence-based action in the laboratory, clinic, classroom, government, and society at-large.

“More and more, the scientific community is demonstrating the power of platforms to connect different communities with diverse areas of expertise and datasets to drive surprising discoveries and accelerated impact across a broad number of conditions in both children and adults,” said Dr. Resnick of D3b. “The DAPI Project will build on these efforts through the implementation of new technologies and platforms that will empower large-scale, diverse INCLUDE datasets on behalf of individuals with Down syndrome and other associated medical conditions and diseases.”

The DAPI Project is organized into three cores, roughly centered at each of the three partner organizations:

  • Data Portal Core.Led by Dr. Resnick at D3b, the Data Portal Core oversees the development of the web-based data portal, which will be the public-facing centralized platform for data sharing and analysis. Dr. Resnick and the team at D3b are recognized leaders in collaborative, data-driven science, with expertise in pediatric cancers and diseases and large-scale data visualization and analysis.
  • Data Management Core. Led by Dr. Guinney at Sage Bionetworks, the Data Management Core directs the overall data management practices for the DAPI Project, including protocols for data collection, governance, harmonization, processing, and sharing. Sage Bionetworks is a non-profit biomedical research organization devoted to responsible, open data-sharing practices, with broad expertise in computational and systems biology, as well as neurodegenerative diseases.
  • Administrative and Outreach Core.Led by Dr. Espinosa at the Crnic Institute, the Administrative and Outreach Core leads outreach, education, and stakeholder engagement efforts for the scientific and Down syndrome communities, as well as overall project management. Dr. Espinosa and the Crnic Institute team are leading Down syndrome researchers who also administer a large Down syndrome research program at the University of Colorado.

Additional experts from Centre Hospitalier Universitaire Sainte-Justine, Oregon Health and Science University, Oregon State University, Seven Bridges Genomics, and Vanderbilt University Medical Center will also collaborate with the DAPI Project team.

“We have created a truly exceptional team with diverse expertise to accomplish the mission of the DAPI Project,” said Dr. Guinney of Sage Bionetworks. “We are all excited and honored to work with the NIH, the Down syndrome research community, and each other on this new endeavor.”

DAPI Project operations began in early October, including efforts to identify existing Down syndrome cohorts and data already established by researchers, to engage in ‘listening tours’ to understand the needs of the researcher and Down syndrome communities, and to develop frameworks for data governance, standardization, and management. The DAPI Project team aims to release the first version of the public data portal in 2022, while continuing to refine and expand the platform thereafter.


About the Center for Data Driven Discovery in Biomedicine (D3b)

The Center for Data Driven Discovery in Biomedicine (D3b) is a translational biomedical research Center of Emphasis at the Children’s Hospital of Philadelphia Research Institute. D3b’s multi-disciplinary expertise is accelerating bench-to-bedside research on behalf of children diagnosed with cancer and other rare conditions. D3b’s seven collaborative units bring together experts in oncology and basic research, genomics, data science, bioinformatics, neurosurgery, and other research-related disciplines to discover breakthroughs for every child, every time, everywhere. To learn more about the D3b Center, visit https://d3b.center/.

About the Linda Crnic Institute for Down Syndrome

The Linda Crnic Institute for Down Syndrome is the first academic research center fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute administers a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook and Twitter @CrnicInstitute.

About Sage Bionetworks

Sage Bionetworks is a nonprofit biomedical research and technology development organization that was founded in Seattle in 2009. Our focus is to develop and apply open practices to data-driven research for the advancement of human health. Our interdisciplinary team of scientists and engineers work together to provide researchers access to technology tools and scientific approaches to share data, benchmark methods, and explore collective insights, all backed by Sage’s gold-standard governance protocols and commitment to user- centered design. Sage is a 501c3 and is supported through a portfolio of competitive research grants, commercial partnerships, and philanthropic contributions. To learn more, visit https://sagebionetworks.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).

Rachel, Marian, and Caterina

Exclusive $25 Tickets Gives a Remarkable Opportunity to
Experience this Inspirational and Star-studded Celebration

Buy Tickets to Be Beautiful Be Yourself Fashion Show Here

Press Contacts:

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

DENVER, CO October 28, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced Multiplatinum Artist Rachel Platten, The Fray’s Isaac Slade, and The Ransom Notes will all perform at GLOBAL’s one-night only virtual Be Beautiful Be Yourself Fashion Show on Saturday, November 14, 2020. Platten will perform her iconic “Fight Song” and “Better Place,” while Slade will perform “How to Save a Life” in tribute to COVID-19 survivors with Down syndrome. The Ransom Notes will share their wonderful Folk-Americana-Bluegrass music all the way from Nashville.

For the first time ever, GLOBAL is offering tickets at only $25 that will provide an extraordinary opportunity for people from across the U.S. and the world to attend this award-winning, inspirational, and star-studded event.

An impressive list of over thirty celebrities will be supporting GLOBAL’s annual fundraiser including Music Legend Quincy Jones, supermodel Beverly Johnson, model Madeline Stuart, award-winning actors and brothers Matt Dillon and Kevin Dillon, award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, and Megan Bomgaars; motivational speaker Tim Harris, Denver Broncos Von Miller, Brandon McManus, Justin Simmons, Phillip Lindsay, and Jake Butt, reality show host Jeff Probst, Golfer Brad Hennefer, Buffalo Bills’ Harrison Phillips, R&B power couple Ronnie & Shamari DeVoe, and musician Sujeet Desai, among others already announced. This year’s Quincy Jones Exceptional Advocacy Awards will honor two powerful women: Grey’s Anatomy star Caterina Scorsone and Spanish model Marián Ávila. Celebrities are showing up in full force to support GLOBAL and honor the accomplished awardees.

Celebrities will virtually escort 25 beautiful models from 8 states and 3 countries down the runway. Model and 2020 GLOBAL Ambassador Walt Snodgrass is excited and ready, “I can’t wait to share my moves. It is so fun to be in the GLOBAL fashion show. But GLOBAL is also important for my health, and the health of everyone with Down syndrome.”

Chairs Jill and Lou Rotella III could not agree more. “The Global Down Syndrome Foundation just published the first-ever evidence-based medical care guidelines for adults with Down syndrome. They are delivering for our community on so many levels and they need our help now more than ever. We hope others will step up and support GLOBAL during this difficult time.”

Be Beautiful Be Yourself Fashion Show will also pay loving tribute to DeOndra Dixon, the inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award, who tragically passed away this month.

“Quincy Jones himself introduced us to DeOndra as one of the most articulate, irrepressible, magnetic people he had ever met,” says Michelle Sie Whitten, GLOBAL’s President and CEO. “GLOBAL has lost our talented, intelligent, feisty, beautiful, kind, loving, caring, pure and giving heart, DeOndra Dixon. Our Down syndrome community has lost a beacon of hope, a true leader, and role model whose aim was to always help others.”

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.

For more info on Be Beautiful Be Yourself Fashion Show on Saturday, November 14, 2020 at 6:30pm MST:

The event itself will be hosted on ClickBid, a virtual event platform with live stream, auction and donation options. A virtual access code will be sent to ticket holders and can be used on multiple devices.

To support GLOBAL’s work, please consider a donation.
To learn more, visit: www.bebeautifulbeyourself.org
To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/


 

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).

A Loving Tribute to DeOndra Dixon

October 24th, 2020 by Global Down Syndrome Foundation

A Loving Tribute to DeOndra Dixon

 

GLOBAL’s 2020 virtual Be Beautiful Be Yourself Fashion Show ended with a loving tribute to GLOBAL Ambassador DeOndra Dixon and brought us all to tears. 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. DeOndra’s legacy will power us on. ALWAYS LOVED NEVER FORGOTTEN.

With the heaviest of hearts and full of sorrow, we are beyond sad that our beloved Global Ambassador DeOndra Dixon has passed. She is no doubt a true angel looking down on us, just as she was always an angel on earth.

The Global Down Syndrome Foundation’s highest honor, the Quincy Jones Exceptional Advocacy Award, was inspired by DeOndra and she was its first recipient. Quincy Jones himself introduced us to DeOndra as one of the most articulate, irrepressible, magnetic people he had ever met. DeOndra was brought into this world in a loving family who treated her like any other family member. They gave her the gifts of complete acceptance, confidence, and knowledge. They empowered her to graduate with a regular diploma from high school and to take life by storm, which, if you knew DeOndra, she absolutely did. Her parents, Annette and George Dixon, brother Jamie Foxx, sister Deidra Dixon, nieces Anelise and Corinne, dear friend Kim, and large extended family are beyond consolable, and we ask that you help us respect their privacy during this difficult time.

For Global, we have lost our talented, intelligent, feisty, beautiful, kind, loving, caring, pure and giving heart, DeOndra Dixon. Our Down syndrome community has lost a beacon of hope, a true leader, and role model whose aim was to always help others. She was a bright light in this world of ours.

DeOndra was our anchor. Her excitement for our Be Beautiful Be Yourself Fashion Show each year was palpable, and she often posted about her “secret moves” that she was practicing (and she did keep them secret right up until her stage call).

Over the years our fashion show became a reunion for Global’s “extended Down syndrome family” where DeOndra and her family, Quincy Jones, John C. McGinley, Amanda Booth, Beverly Johnson, Kyra Phillips & John Roberts, Ronnie & Shamari DeVoe, Matt Dillon, The Salah Foundation, Peter Kudla, Jules Haimovitz, Tomago Collins, Jay Mills, the Gold/Rest/Karsh/Perry, Vollbracht/Winfield, Capuano, Rotella, Sikora, Levin, Fonfara-LaRose, and Snodgrass families, our families, our tribes would come together over a weekend and celebrate life and people with Down syndrome.

Our extended family loves DeOndra deeply and unreservedly for who she is. Global and DeOndra’s family cannot imagine our fashion show without her, and so through our heartbreak and tears, we were able to honor her memory at our Be Beautiful Be Yourself Fashion Show with a loving tribute video and announce the “DeOndra Dixon Down Syndrome Research Fund” set up in conjunction with DeOndra’s family. The fund will focus on research to address the disparity of lifespan for African Americans with Down syndrome and will be matched up to $100,000 by a generous donation from Anna and John J. Sie.

Everyone at the Global Down Syndrome Foundation is in complete shock and full of grief. Please join us in honoring her and share your fondest memories of our beautiful and brilliant DeOndra Dixon. DeOndra is already sorely missed, but she will never be forgotten.

From Down Syndrome WorldTM 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.

#2 – Once infected, people with Down syndrome have an increased risk of experiencing a stronger cytokine storm and thus a more severe case of COVID-19.

#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.


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!

The Global Guideline is Published in the Print & Online Versions of JAMA,
Ensuring Clinicians Across the U.S. Have Access

Press Contacts:

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

October 20, 2020 Denver, CO – After four years of coordination, compilation, and rigorous assessment and writing, the Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome© (Global Guideline) is complete and available at no cost.

The authors include the clinical directors of eight of the largest adult Down syndrome medical centers in the country – Advocate Health Care in Chicago, University of Pittsburgh Medical Center, Kennedy Krieger Institute at Johns Hopkins School of Medicine, University of Kansas Medical Center, University of Arkansas for Medical Sciences, and Denver Health in conjunction with the Anschutz Medical Campus School of Medicine at University of Colorado.

The first-in-kind Global Guideline was peer reviewed, edited, and published in the Special Communication section of the print and online October 2020 issue of JAMA, the Journal of the American Medical Association.

“We are so pleased that the quality of our guideline rose to the occasion of being published in JAMA, and we are deeply grateful to our families and self-advocates for pushing us to work on this difficult project,” says Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation (GLOBAL). “Now we can focus on collaborating with other Down syndrome and disability organizations as well as medical institutions to ensure clinicians are following our Global Guideline and measuring outcomes.”

The Global Guideline is for clinicians and addresses nine medical areas: Behavioral Health, Dementia, Diabetes, Cardiovascular Disease, Obesity, Atlantoaxial Instability, Osteoporosis, Thyroid, and Celiac Disease.

It is made up of 14 recommendations and 4 statements of good practice. Some of the recommendations align with existing guidelines for individuals without Down syndrome, and two are markedly different. There were several questions associated with the recommendations that had no published research evidence, and therefore were answered based on the clinical expertise of the authors.

“It’s clear that the lack of Down syndrome research funding over the last 20 years has prevented us from easily or quickly creating these guidelines,” says Bryn Gelaro, LSW, Director of Adult Initiatives & Special Projects at GLOBAL. “We were fortunate to have expert authors and volunteers who helped identify important research needs that will bolster and better define our future Global Guideline recommendations.”

Author Amy Tsou, MD, from ECRI, an independent nonprofit and Evidence-based Practice Center, with support from Gelaro, helped spearhead the research methodology, which included PICO (Population/Intervention Comparison/Outcome) questions, the GRADE (Grading of Recommendations, Assessment, Development, and Evaluation) methodology, and focus groups from various stakeholders informed the final draft.

“I participated in the task force of over 40 self-advocates and family members that provided GLOBAL with the directive they needed to focus on adult care guidelines – even if it would be difficult and take a lot of time,” says Karen Gaffney, a nationally renowned athlete, GLOBAL Q-Awardee and spokesperson. “It was great to be able to participate in the week-long focus group of self-advocates and family members and see it all come together.”

“From the beginning, GLOBAL has been leading the way, empowering people with Down syndrome with improved care and health outcomes,” says mom Darlene Beals. “The Global Guideline is an important new resource for my 24-year-old son Alan, and I believe if anyone can get to the bottom of health disparities for African Americans with Down syndrome, it’s GLOBAL.”

Alan echoes his mom’s sentiments, “[I want to know] when to take thyroid medicine, once a day? How to live a healthy life in my own apartment and keep the apartment clean?” Alan is also concerned about doctors knowing how to pay Medicaid insurance.

While the Global Guideline is free of charge to any stakeholder, the copyright of the JAMA publication and of GLOBAL’s long-form publication prohibits the reproduction of the Global Guideline on any website or digital platform. However, printing and downloading for personal and clinical use is highly encouraged.

GLOBAL has support from over 50 local, national, and international Down syndrome organizations and several generous sponsors. By the end of 2021, GLOBAL plans to translate and distribute this transformative new resource into several languages, and to update and expand the Global Guideline every 6 years.

A webinar and Q&A with the renowned and expert authors will be held on Wednesday, October 21, 2020. To learn more or sign up, please click here.

The Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome Workgroup includes (in alphabetical order of lead and supporting authors):

  • Peter Bulova, MD: Associate Professor of Medicine, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania
  • George Capone, MD: Director, Down Syndrome Clinic & Research Center, Kennedy Krieger Institute, Associate Professor of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland
  • Brian Chicoine, MD: Medical Director, Advocate Medical Group Adult Down Syndrome Center, Park Ridge, Illinois
  • Terry Odell Harville, MD, PhD, D(ABMLI) D(ABHI): Professor of Pathology and Laboratory Services, and Internal Medicine, Department of Pathology and Laboratory Services, and Department of Internal Medicine, Division of Hematology, University of Arkansas for Medical Sciences, Little Rock, Arkansas
  • Barry A Martin, MD: Associate Professor of Clinical Practice, Division of General Internal Medicine, University of Colorado School of Medicine, Anschutz Medical Center, Aurora, Colorado
  • Dennis McGuire, LCSW, PhD: Private Practice, Evanston, Illinois
  • Kent D. McKelvey, MD: Associate Professor, Rockefeller Chair in Clinical Genetics, University of Arkansas for Medical Sciences, Little Rock, Arkansas
  • Moya Peterson, PhD, APRN, FNP-BC: Clinical Professor, University of Kansas Medical Center, Schools of Nursing and Medicine, Kansas City, Kansas
  • Amy Y Tsou, MD, MSc: Evidence-based Practice Center, ECRI Center for Clinical Excellence and Guidelines, Plymouth Meeting, Pennsylvania; Staff Neurologist, Division of Neurology, Michael J Crescenz Veterans Affairs Medical Center, Philadelphia, Pennsylvania
  • Carl Tyler, MD, MSc: Director of Developmental Disabilities – Practice-Based Research Network, and Professor, Family Medicine and Community Health, Cleveland Clinic Lerner College of Medicine, Case Western Reserve University School of Medicine, Cleveland, Ohio
  • Michelle Sie Whitten, MA: President & CEO, Global Down Syndrome Foundation, Denver, Colorado
  • Bryn Gelaro, MA, LSW: Director of Adult Initiatives, Global Down Syndrome Foundation, Denver, Colorado
  • Michael Wells, BS: Formerly Research Coordinator, Developmental Disabilities – Practice-Based Research Network, Cleveland, Ohio

About the 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 150 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 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).

A Team Effort: Why This Award Isn’t Just For Me

October 13th, 2020 by Global Down Syndrome Foundation

Award

A Team Effort: Why This Award Isn’t Just For Me
By: Ashley Sparhawk, 2020 recipient of the Colleen Barrett Award for Administrative Excellence

Admin Award
Ashley Sparhawk, 2020 recipient of the Colleen Barrett
Award for Administrative Excellence

Thank you so much to Colleen Barrett for selecting me to be this year’s recipient. I am thrilled to be named the 2020 Denver Admin Awards recipient of the Colleen Barrett Award for Administrative Excellence. I was so humbled just to be nominated, so it is truly an honor to receive this prestigious award in your name.

Thank you Admin Awards for putting on such a fun and meaningful event! It’s been a tough year, but you all pulled off a great event. When Christine Fiero (2018 recipient of the Colleen Barrett Award for Administrative Excellence) brought the Admin Awards to my attention by nominating me last year, I knew I had to be involved (win or not) with this fantastic and unique organization for years to come. The Admin Awards is such a wonderful tribute to administrative professionals’ hard work and importance around the country.

I would like to recognize all the talented and hardworking admins nominated (especially the other Colleen Barrett finalists Bonnie Azevedo and Lori Lucero, plus my everyday partner at Global, Marisa, also a finalist in the Office Manager of the Year category). I’m honored to call you my peers.

Thank you everyone who nominated me! I owe this to you.

I want to dedicate this award to my boss, Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. I would not be here if it weren’t for you.

Michelle works tirelessly day in and day out to ensure that people with Down syndrome are given better lives through education, research, medical care and advocacy. It’s such an honor to work alongside you every day, to learn from you and to help transform the lives of people with Down syndrome.

Seven years ago, Michelle took a chance on me. Listening to and learning from Michelle over the years has been the most amazing and rewarding experience. She’s taught me how to be a strong woman in the workplace, a thoughtful colleague and how to always push for the best.

Michelle has this great gift of pinpointing the best qualities in her staff, maximizing on what they’re good at and elevating those talents to then help the greater good of our organization to ultimately to help individuals with Down syndrome.

I really wanted to make a difference in the world and I found that at the Global Down Syndrome Foundation. I love what I get to do every day. We work so hard, but we also have fun. And of course nothing beats that rewarding feeling of knowing that we are truly making a difference.

Thank you to the Admin Awards and Colleen Barrett for this honor. I will continue to strive to be a strong woman in the workplace, provide excellent customer service to my colleagues and constituents, and embody this award’s spirit.

Most of all thank you Michelle. I’m honored to call you my colleague, my friend, my role model.

Denver Metro Admin Awards LIVE! 2020 Finalist Tribute Video

Denver Metro Admin Awards recorded LIVE! 2020

Understanding the Impact of Immune Dysregulation in COVID-19 Patients with Down Syndrome May Lead to Tailored Prevention, Diagnosis and Treatment

Press Contacts:

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

September 25, Denver, CO – Researchers at the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus (Crnic Institute) have been awarded three grants totaling $1 million, two from the National Institutes of Health (NIH) and one from Fast Grants, to understand how the hyper inflammatory state of the immune system in people with Down syndrome may result in more severe complications upon SARS-CoV-2 infection. Studying both people and mouse models, the aim is to develop tailored COVID-19 prevention, diagnosis, and treatment for individuals with Down syndrome.

Preliminary data suggests people with Down syndrome are more likely to be hospitalized and die at a younger age due to COVID-19 compared to the typical population. However, much more information is needed, and currently little is known about how COVID-19 affects individuals with Down syndrome.

“What our research has already shown is that people with Down syndrome have substantial dysregulation in their immune systems, which could impact not only their initial response to SARS-CoV-2 and their clinical outcome if they become ill with COVID-19, but also the development of potential long term side effects. Understanding each of these pieces is crucial for understanding the risks and developing proper medical care for people with Down syndrome who get COVID-19,” explains Dr. Joaquín Espinosa, Executive Director of the Crnic Institute.

The NIH and Fast Grants awards build upon the following important coalescing factors:

  1. The Crnic Institute’s breakthrough discovery that people with Down syndrome are
    affected by chronic autoinflammation.
  2. Patients with COVID-19 who have severe symptoms or die have hyperactive
    inflammation similar to that observed in people with Down syndrome.
  3. A class of FDA-approved drugs called “JAK-inhibitors” (such as Olumiant, Xeljanz, and
    Jakafi) are being evaluated world-wide to treat patients with COVID-19, and the Crnic Institute is testing Xeljanz to treat autoimmune and hyper inflammatory skin diseases in people with Down syndrome.

More specifically, these awards will allow Crnic Institute researchers to create an unprecedented body of knowledge by aggregating information and samples from individuals with Down syndrome diagnosed with COVID-19 through its Human Trisome ProjectTM data set and the National COVID Cohort Collaborative (N3C). In addition, Crnic Institute researchers will also test the ability of JAK inhibitors to normalize the hyper inflammatory state in a mouse model of Down syndrome.

“We are grateful to the NIH for identifying people with Down syndrome as a high risk population for COVID-19, and for acting quickly to fund research that could help save the lives of our children and adults from this terrible virus,” says Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation, an internationally renowned advocacy non-profit and an affiliate of the Crnic Institute. “Global, and the people with Down syndrome we serve, are also fortunate to have our congressional champions and our Crnic Institute scientists who are both brilliant and compassionate.”

About the Linda Crnic Institute for Down Syndrome
The Linda Crnic Institute for Down Syndrome is one of the only academic research centers fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute supports a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook and Twitter @CrnicInstitute.

About the 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 150 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 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).