A sad morning for GLOBAL and the world.

This morning, we woke up to shocking and very sad news that our dear friend, mentor, supporter and champion, music legend Quincy Jones has passed away. Our hearts ache for his family and his loved ones. Quincy lived an enormous life and gave back to this world with all his heart. How lucky were we as a family and as the Down syndrome community to be on the receiving end of that love?

Quincy is iconic for his unparalleled talent – 28 Grammys and 80 nominations, collaborations with the likes of Frank Sinatra and producing legends such as Michael Jackson. But to my family and to our Down syndrome community he was equally known for his love for Sophia and all our children with Down syndrome who he often spoke about with conviction: “These children aren’t broken, they just need a leg up, the chance to reach their God-given potential.”  

Quincy brought magic to GLOBAL and our Be Beautiful Be Yourself Fashion Show. Each year we give our highest honor, the Quincy Jones Exceptional Advocacy Award, and he introduced us to our first recipient – GLOBAL Ambassador DeOndra Dixon and her family, including big brother Jamie Foxx. This year will be bittersweet when we bestow the award upon Woody Harrelson and Sofia Sanchez.

My dear Dad who himself is 88 is heartbroken but in the end, we know he lived a wonderful life, has the most amazing children and friends, and will be forever loved and remembered.

Please join us in sending loving thoughts and prayers for Quincy and for his family.

A message from GLOBAL’s President & CEO, Michelle Sie Whitten

Cable Baby & Role Model

Growing up in the cable TV industry in Colorado (as I remember it) there were several friendly “camps” – the Bob Magness/John Malone camp, the Bill Daniels camp, the Glenn Jones camp, and the Gene Schneider camp to name a few. Being a self-described “cable baby” in the Magness/Malone camp, I was vaguely aware of other families my parents were friends with including Gene Schneider and his kids – Mark, Tina and Carla. Carla especially had the reputation of being one of the nicest people ever, but I didn’t get a chance to really get to know her until I moved back to Colorado with my husband Tom around 2000.

Carla and her equally wonderful and sweet husband Matt visited Tom and me after we told people publicly that our first-born child would have Down syndrome, and again several times after our Sophia was born.

They proudly introduced us to Alexandra who was about five years old at the time and was born with Shprintzen-Goldberg syndrome. There are less than 50 people with the syndrome worldwide – an extremely rare connective-tissue and cranial disorder characterized by craniofacial and skeletal anomalies and intellectual disability that affects developmental motor and communication skills, vision and hearing from birth.

It was clear to Tom and me that despite the multitude of surgeries and challenges Alexandra was facing, she was thoroughly loved and doted on by Carla and Matt and through that love she was able to communicate, be heard, and enjoy what she wanted to do.

While Tom and I may have already made the decision “to keep” Sophia (so embarrassing to think of it that way now), meeting Carla and Matt with Alex helped to confirm we were making the right decision. After all Tom and I loved each other to the moon and back, and our child would be a literal and figurative combination of the best of both of us. Just like our role models Carla and Matt.

Years later, after I started the Global Down Syndrome Foundation, we had 16 people audition for the first Be Beautiful Be Yourself Fashion Show, and we were delighted that Alex was one of the models. Though we had intended to only have 10 we accepted all 16 models who had intellectual and developmental disabilities (IDD).

The original plan was to always have a mix of models with various IDD but by the third year of the fashion show we would have 50 names, all with Down syndrome, sign up within the first 20 minutes. Turns out being a model in our fashion show was one of MANY things Alex loved to do so she became the singular reminder each year that our children and adults with Down syndrome are part of a bigger community of fabulous people who happen to be differently-abled.

A Family & Community Legacy

When Alex’s siblings, Geno and the twins Holly & Kelsey were born, the number of people who adored Alex and also understood the value of diversity in the world grew exponentially. It was clear that Carla and Matt were beyond wonderful parents. Carla and the kids sadly lost Matt to cancer in 2011  but Carla somehow soldiered through with the amazing support of her sister Tina and family locally, her wonderful kids who were growing up to be as kind and giving as her and Matt, and a network of many, many friends from all walks of life.

While Carla was no intellectual slack (she received her BA from Colorado College and her JD from DU Law School), she had a definite love for enjoying life – playing sports, watching sports (especially the Broncos), international travel, colorful clothes, and cocktails were some enjoyments at the top the list! She instilled the love for life and actively participating in all her children, and the fact that Alex was a Girl Scout Brownie, and continues to enjoy Right Step Horseback riding, Dare to Cheer, Dance Athletics Denver, National Sports Center for the Disabled (NSDC) and Adam’s camps, basketball, and baseball is a testament to how Carla ensured her family’s lives are filled with activity and happiness.

One thing that was always striking to me was that Carla always had people helping Alex who genuinely cared about Alex and who understood that she had desires – what color her nail polish was, what outfits to buy or wear, what activities to participate in. And her mischievous nature, which included the act of “stealing” your nose and then throwing it away while giggling, was always encouraged.

In addition, Geno, Holly and Kelsey were always there for Alex and volunteering in many of Alex’s activities. It was clear they felt infinitely comfortable with our Sophia and anyone who was differently-abled. Their gregarious natures meant loads of friends in and out of the Shankle household who also became friends with Alex and expanded their circles of diversity. Watching Carla and her family thrive was inspiring and sometimes unbelievable as she always made it look so seamless.

Tragically, Carla passed away last month at the age of 62 with her loving family by her side. It was no surprise that it was standing room only at Carla’s funeral or that everyone was asked to wear bright colors or that her preferred photo was with a drink and at a Broncos game! The speeches had us laughing more than crying and left us feeling that Carla had left a legacy for her four beautiful children and extended family as well as for our disability community where she was a fierce advocate for special needs rights, health and education.

Our hearts go out to Carla’s children. It is hard to understand how the world keeps going after someone as vibrant as Carla leaves us. At her funeral we were given consolation in that Carla, Matt, her parents and other loved ones will be united, but we will miss her deeply.

We are very moved that Carla and her family listed the Global Down Syndrome Foundation as one of the non-profit organizations that friends and families can donate to in honor of Carla’s life. We will work hard to honor the memory and legacy of Carla Gene Shankle and to make sure that Alex will always be a part of our GLOBAL family.

Carla Shankle Obituary.

GLOBAL is thrilled to partner with Jack’s Basket to gift FREE one-year GLOBAL memberships to new parents who recently received a prenatal or postnatal Down syndrome diagnosis. Thanks to Jack’s Basket’s extensive distribution network, thousands of parents will enjoy newfound access to research and medical care GLOBAL Webinars and the award-winning Down Syndrome World magazine.

“We are grateful for the generous gift of a one-year GLOBAL membership to our basket recipients,” says Jack’s Basket Founder & CEO Carissa Carroll, M.Ed., “We hope our new and expecting families will get connected and experience the incredible education, research, and resources GLOBAL provides. We are thankful for GLOBAL’s support of our mission and believe our partnership aligns with our shared goals of ensuring that individuals with Down syndrome, their families, and providers have access to resources from the timing of diagnosis.”

 Since its inception in 2014, Jack’s Basket has sent free celebratory gift baskets to over 8,800 babies born with Down syndrome across all 50 states and 46 countries. Each Jack’s Basket contains baby gifts, the contact information of a parent raising a child with Down syndrome, and a collection of books and resources. Among these resources is the Prenatal & Newborn Down Syndrome Information Pamphlet created by GLOBAL in collaboration with The National Down Syndrome Congress and National Down Syndrome Society, which has been included in all Jack’s Baskets since 2023.

“Jack’s Basket is changing the diagnosis experience for parents around the country and the world, by providing a warm welcome – and vital information – to new parents,” says GLOBAL Vice President of Strategic Alliances David Tolleson, “We are very grateful to our friends at Jack’s Basket for providing our Prenatal & Newborn Information Pamphlet, as well as the opportunity to accept a one-year complimentary GLOBAL Membership, in their baskets!”

GLOBAL’s quarterly hour-long webinars cover important topics in Down syndrome research and medical care such as “How to Manage Swallowing Issues in Children with Down Syndrome” and “Sleep Apnea Across the Lifespan.” In addition to presenting on their area of focus, experts answer every question posed by webinar viewers in real time and/or in the weeks following. While presentation slides are available to the public, videos of new and archived webinars are a benefit for GLOBAL Members.

Down Syndrome World™ magazine has received 17 prestigious national awards for excellence in healthcare reporting, including gold, silver and bronze Aster and Healthcare Advertising Awards. The magazine features human interest stories, and features on research, medical care, and movers and shakers from politics to entertainment to non-profits. Keep an eye out for the Scholastic-style Fun Search towards the end of every issue!

Have you or a loved one recently received a Down syndrome diagnosis? Request a complimentary Jack’s Basket full of baby gifts and important resources, including the Prenatal & Newborn Down Syndrome Information Pamphlet, today!

We are honored to share that GLOBAL was selected as the top winner at the CEO Success Community Playing for Charity Corporate Night during the WBENC National Tradeshow in Denver in March 2024. This is the largest conference for women-owned businesses, connecting them with Fortune 500 companies through seminars and special events. 

“We selected GLOBAL as one of our three charity choices based on your outstanding work and in honor of our Tradeshow Booth Corporate Sponsor Kristin Malek, CDW, and my Aunt Diane, who had Down syndrome,” said Marianne Ellis, Co-Founder & CEO of CEO Success Community.  

The John Denver team’s exceptional music performance in Playing for Charity earned them the highest points, leading to their selection of GLOBAL as their charity of choice. Marianne Ellis, CEO/Co-Founder of CEO Success Community, shared a deeply personal connection, reflecting on Michelle’s story of her daughter Sophia and recalling her Aunt Diane’s own journey with Down syndrome. 

For many families, the threat of Down Syndrome Regression Disorder (DSRD) feels harrowing and constant. Gratefully, two scientists are leading the charge to understand and treat this heartbreaking condition, and thanks to one relentless mom/advocate, they’re working together.

Crnic Institute Executive Director Dr. Joaquin Espinosa and Children’s Hospital Los Angeles Director of Neuroimmunology had no idea they had been developing complementary research on DSRD until mom Linda Roan of Boulder, CO connected the dots for them. The two scientists joined forces to create the first-ever randomized clinical control trial to treat DSRD and secure its funding through NIH’s INCLUDE initiative.

“You hear the phrase ‘it takes a village’ a lot,” says Linda, “Global has been the leader in the village that has put recognition, funding, and advocacy for Down Syndrome Regression Disorder on the map.  Global’s lobbying and funding for DS research has made all the difference.  Miah is doing well largely due to the Crnic Institute, and we wouldn’t have Crnic without the vision of Michelle Sie Witten and Global.  I can’t thank them enough.”

“So many people helped me get better,” Miah shares, “My mom says that Global, who puts on the dances I love, is the same group that has made a big difference in helping my brain.  I really want to thank them.”

GLOBAL is so proud to support this brilliant work that is helping so many of our loved ones finally “wake up” again after descending into regression. We are just as proud to fight for the continued funding of INCLUDE, which makes life-saving research and clinical trials possible.

Read the full Washington Post article.

Learn more about this groundbreaking clinical trial.

   When the Down Syndrome Association of Southern New Jersey (DSASNJ) was formed in 2003, the small group of founding parents were focused on supporting their young children with Down syndrome. As those children have grown and blossomed over 20 years, DSASNJ has grown to service individuals and families from the prenatal stage to adulthood. The organization proudly serves over 120 families across the Southern New Jersey region.

Earlier this month, GLOBAL Vice President – Strategic Alliances, David Tolleson, met with Terri Bank and Dria Law, Co-Executive Directors of the DSASNJ, to discuss their work to build community and why they strongly support GLOBAL’s mission and resources, including the Medical Care Guidelines for Adults with Down Syndrome.