Archive for September, 2017

Any Day Now

September 29th, 2017 by Global Down Syndrome Foundation

Any Day Now

September 29th, 2017 by Global Down Syndrome Foundation

Society for Pediatric Pathology 2017 Presentation

September 24th, 2017 by Global Down Syndrome Foundation

Down syndrome in the 21st Century symposium attracts a roster of Global experts Global’s medical professionals, scientists, and self-advocates took center stage at this important symposium organized by the Society of Pediatric Pathology. They shared exciting updates and challenges facing patients with Down syndrome and their families. 

Click to Download a Presentation on Pulmonary Development and Disease

Oscar Winner Marisa Tomei Global Down Syndrome Foundation

September 22nd, 2017 by Global Down Syndrome Foundation

Kathy Green | | (720) 280-9725
Anca Call | | (720) 320-3832

The research will focus on the relationship between Down syndrome and Huntington’s Disease

DENVER  – The Global Down Syndrome Foundation (Global) announced that long-time Global supporter, MDC/Richmond American Homes Foundation, will fund a study exploring the connection between Down syndrome and Huntington’s disease.

Huntington’s disease is a fatal hereditary, genetic disorder that causes the progressive breakdown of nerve cells in the brain. The hope is that the $150,000 grant over three years will confirm the relationship, provide a pathway to therapeutics or a cure, and lead to larger grants funded by the federal government or international agencies.

The study is being led by renowned scientist Dr. Huntington Potter, director of the Alzheimer’s Disease Program at Global’s affiliate, the Linda Crnic Institute for Down Syndrome on the Anschutz Medical Campus. Preliminary research results show there is a mechanistic relationship whereby Down syndrome is defined by having three copies of chromosome 21 instead of two, and individuals with Huntington’s disease produce three copies of chromosome 21 in many of their cells.

“We are extremely grateful to MDC/Richmond American Homes Foundation and the Mizel family for their on-going support for people with Down syndrome,” said Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation. “This additional research support will allow us further understand the connection between Down syndrome and Huntington’s disease, and hopefully help both people with Down syndrome and those with Huntington’s disease.”

“There is undoubtedly a connection between most major neurological disorders,” said Dr. Potter. “With Global’s support and this grant, we have the long-term opportunity to develop an early intervention and treatment to prevent the development of aneuploidy and consequent neural loss prior to dementia in both populations.”

About the Linda Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome

The Linda Crnic Institute for Down Syndrome is the first medical and research institute with the mission to provide the best clinical care to people with Down syndrome, and to eradicate the medical and cognitive ill effects associated with the condition. Established in 2008, the Crnic Institute is a partnership between the University of Colorado School of Medicine, the University of Colorado Boulder, and Children’s Hospital Colorado. Headquartered on the Anschutz Medical Campus in Aurora, the Crnic Institute includes the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

September 2017 Newsletter

September 17th, 2017 by Global Down Syndrome Foundation

Award-winning actor Garret Dillahunt at Sie FilmCenter Screening of Any Day Now!

Game On – With Super Bowl Champion Ed McCaffrey

September 1st, 2017 by Global Down Syndrome Foundation

Taking the field is a momentous, confidence-building event for any young athlete. Super bowl champion and former Denver Broncos wide receiver Ed McCaffrey is dedicated to ensuring children and young adults with down syndrome don’t miss out.


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!

When Global Down Syndrome Foundation President and CEO Michelle Sie Whitten first met McCaffrey, there must have been an electric force field around them. The two high-energy, get-thingsdone people started discussing their passion for equality and fighting discrimination. The conversation turned to making Colorado the best place for people with Down syndrome to live and resulted in Global establishing the Dare to Play Football Camp with Ed McCaffrey as its featured coach.

“I’ve played football my whole life, and I’ve been coaching camps for 10 years,” McCaffrey said. “When I found out from Michelle that there aren’t many opportunities for kids with Down syndrome to play team sports, specifically football, we got together and decided, ‘Let’s make a football camp for them.’ They’re having fun, they’re making friends — they’re playing football for the same reasons we all started playing football.”


Global’s Dare to Play Football Camp lets participants learn from the best, including McCaffrey, who’s no ordinary instructor. The 13-season NFL all-star has played with the New York Giants, San Francisco 49ers, and Denver Broncos. A three-time Super Bowl champion, McCaffrey is one of only 31 NFL pla yers to win a Super Bowl with two different teams. He’s been a cornerstone of Global’s Dare to Play Football Camp every year since it started in 2010.

“I look forward to it every year,” McCaffrey said.

“What a blessing. Global organizes such a great opportunity for so many individuals with Down syndrome to play the great game of football, while also spreading awareness in the community about all the wonderful things individuals with Down syndrome can do. We’re working to dispel a lot of negative stereotypes.”

Each year, the camp attracts other professional volunteer coaches. In addition to McCaffrey, the star studded 2017 roster included Brandon Stokley, Tyler Polumbus, Shaquil Barrett, and Todd Davis, who have eight Super Bowl rings between them. Past pros include Ben Garland, Danny Trevathan, Chris Kuper, Britton Colquitt, Orlando Franklin, Malik Jackson, Ben Hamilton, Jack Del Rio, Brian Dawkins, and Joel Dreessen, who had nothing but praise for McCaffrey’s coaching and their experience at the event. “I’m blown away by it,” Dreessen told The Denver Post. “Ed McCaffrey was one of my heroes growing up, too. I always wanted to be just like him. So, to see him have his hand in something that gives back like this, it gives me more reason to really like it.” Global’s Dare to Play Football Camp is held at Valor Christian High School in Highlands Ranch, Colorado, and each participant is paired with a high school football player, or “Pal,” for camp practices and the big game day. The Denver Broncos Cheerleaders are equally important partners for Global’s Dare to Cheer Program, which runs simultaneously with the football camp.

The big game day has a dramatic opening, with the Denver Broncos Thunderstorm skydivers landing on the field, and it goes on to feature two scrimmages, lots of cheerleading, cheering from hundreds of fans, and the Denver Broncos mascot, Miles.

“It’s the smiles on the campers’ faces when they catch a ball or score a touchdown,” McCaffrey said, when asked about his favorite moments from the camps. “When they pick their teammate up who has fallen down, when they show compassion and joy and enthusiasm, it’s just that look that you see from them.”

“Ed makes fun of me because I don’t know a lot about football or who the celebrity coaches are,” Whitten said. “But it is obvious even to me what an impact this has on our self-advocates . The one thing that took me aback w as several of the fathers in par ticular getting teary eyed because they thought their sons with Down syndrome would never play football. I’m so glad w e turned that stereotype on its head!”


Studies have shown that physical activity builds self-esteem and boosts feelings of well-being, and so do connections.

“My favorite part is the practice time with my buddies and Pal and the game day,” said self-advocate Ben.

“I truly enjoyed helping coach the campers and getting to know them,” said Tanner, a Valor Christian Pal. “It was an amazing experience — one I will never forget. I can’t wait for next year!”

Twenty-one-year-old Maya, who has attended every Global Dare to Cheer Camp since 2010, is another shining example of the confidence physical activity offers. “My favorite part is the football team!” she shared. “What I like most about Dare to Cheer is my friends. My favorite cheer is ‘Blue and White, Fight Team Fight’.”

When asked who her favorite Bronco is, there was no hesitation. “Ed McCaffrey!”


For Ed McCaffrey, sports and giving back is a family affair. His wife, Lisa, was a soccer star at Stanford University, and their four sons are following in dad’s footsteps. Max is a wide receiver for the Green Bay Packers. This fall, Christian began his first season with the Carolina Panthers, and Dylan began playing in the Big 10 as a University of Michigan Wolverine. Luke, the youngest, still plays quarterback, receiver, and defensive back for Valor Christian but has received scholarship offers from eight college football heavyweights, including Michigan, where his brother plays, and The Ohio State University.

The four siblings have been Pals for Global’s football camps every year, and last year, Christian flew back from Stanford to help coach. Christian shared with ESPN and Down Syndrome World™ magazine how the camp has enriched his life and helped him create a lifelong friendship with camper Dusty, who happens to have Down syndrome (these stories are available at The key with the McCaffreys is that they don’t treat people with Down syndrome any differently, and they believe deeply in Ed McCaffrey’s wisdom.

“Kids with Down syndrome want to play sports for the same reasons everyone else does,” he said. “They want to have fun, they want to make friends, and they want to be part of a team.


Global Down Syndrome Foundation’s Health and Wellness Programs include the Dare to Play Football Camps, the Dare to Cheer Camps, the Be Beautiful Be Yourself Dance Class, the Dare to Play Soccer Camp, and the Dare to Play Tennis Camp. Nearly 50 percent of the participants are on full or partial scholarships. The programs provide a great sports experience and allow Global an opportunity to provide information about life-changing medical care and research and connect families with resources. Nearly 100 percent of children and young adults involved in Global’s Health and Wellness Programs have received medical services at Global’s affiliate, the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

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