Archive for 2017

New study redefines Down syndrome as immune system disorder

December 26th, 2017 by Global Down Syndrome Foundation

Discovery by researchers at the Crnic Institute opens the door to treatments and potential discoveries across major diseases

Media Contacts:
Kathy Green | kgreen@globaldownsyndrome.org | (720) 280-9725
Anca Call | acall@globaldownsyndrome.org | (720) 320-3832

DENVER – A groundbreaking new study conducted by the Crnic Institute for Down Syndrome shows definitively that Down syndrome can be categorized as an immune system disorder, based on analyses of thousands of proteins found in blood samples.

The study by the Crnic Institute for Down Syndrome at the University of Colorado School of Medicine on the Anschutz Medical Campus was recently published in Nature’s sister journal, Scientific Reports, and was underwritten by the Global Down Syndrome Foundation.

Led by renowned scientists Dr. Tom Blumenthal, director emeritus, and Dr. Joaquín Espinosa, executive director of the Crnic Institute, the research team looked at 4,000 proteins in the blood samples from hundreds of individuals with and without Down syndrome, the largest project of its kind.

The study builds upon earlier research published by the Crnic Institute showing that the interferon response is consistently activated in cells obtained from individuals with Down syndrome. This contrasts with the interferon response being activated only when fighting infection or a virus in the general population.

The findings provide an important clue as to why nearly 100 percent of people with Down syndrome get Alzheimer’s disease, why they are susceptible to autoimmune disorders like type 1 diabetes, and why they are protected from solid tumors such as breast and prostate cancer.

“If you compare two large random groups of typical individuals, the proteins in their blood will not greatly differ,” said Espinosa. “Even a comparison of males versus females reveals very few differences. However, we were blown away when we discovered there were hundreds of proteins that are significantly elevated or decreased in the blood of people with Down syndrome versus typical individuals. This offers the scientific community an opportunity to think about ways to restore those proteins to normal levels and to provide effective treatments.”

“When we initiated this study five years ago, partnering with the proteomics company SomaLogic, we had no idea what we would find,” said Blumenthal. “But this kind of exploratory science can yield unexpected and exciting results, as this one did. Indeed, among the hundreds of proteins we found altered in Down syndrome, we actually have the opportunity to identify which ones we should study further.”

Interferons are molecules produced by cells in response to viral or bacterial infection. In a typical person, interferons are activated only when they are fighting an infection. In individuals with Down syndrome, the interferon response appears to be activated constantly, which can predispose them to autoimmune disorders and leukemia, and perhaps even Alzheimer’s disease. In contrast, the same interferon response may be responsible for protecting them from other conditions such as solid tumors.

“Research has a direct impact on health outcomes for people with Down syndrome,” said Michelle Sie Whitten, president and CEO of Global Down Syndrome Foundation. “Each of these studies helps identify potential interventions or treatments for our children and adults, and they also have the potential to advance our understanding of many other chronic diseases that are more or less common in people with Down syndrome.”

Just last week, Whitten, Espinosa, and Global Down Syndrome Foundation advocate Frank Stephens were called as expert witnesses, and to testify before Congress about the lack of Down syndrome research funding by the National Institutes of Health at the first-ever congressional hearing on Down syndrome research last week, Down Syndrome: Update on the State of the Science and Potential for Discoveries Across Other Major Diseases.

About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation is at the forefront of research, medical care, education and advocacy dedicated to significantly improving the lives of people with Down syndrome. Supporting the research of hundreds of scientists around the world, and through our advocates, partners, and affiliates including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome, Global is making an impact on the lives of people with Down syndrome today, and remain focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and lead healthy and productive lives. To learn more, visit. www.globaldownsyndrome.org.

Crnic Institute study published in American Scientist Magazine

December 26th, 2017 by Global Down Syndrome Foundation

People with Down syndrome are the largest human population with a genetic predisposition to develop early-onset Alzheimer’s disease. By the time they reach age 40,100 percent of people with Down syndrome develop the brain pathology of amyloid plaques and neurofibrillary tangles that precede cognitive decline, and a fraction (4 percent to 55 percent) go on to develop dementia by age 59. If researchers could understand why, it could help both people with Down syndrome and those with Alzheimer’s disease.

Thanks for the Overwhelming Support in Washington, DC

December 21st, 2017 by Global Down Syndrome Foundation

 

Special Thanks to our Amazing Sponsors

American Resort Development Association
AT&T
Comcast NBCUniversal
Erin and Ed Mullen
Genentech
National Cable & Telecommunications Association
Pfizer
PhRMA
PricewaterhouseCoopers LLP

 

Be Beautiful Be Yourself Dancers to Perform in “Nutcracker”

December 2nd, 2017 by Global Down Syndrome Foundation

Colorado Ballet Academy Students with Cora Jane and Kristina

Two ballet students from the Global Down Syndrome Foundation’s Be Beautiful Be Yourself Dance Class have been cast by the Colorado Ballet for their official production of the holiday classic “The Nutcracker.”  Both students are part of the ensemble of children partygoers and will have plenty of stage time to show off their dance skills and shine!

Global’s star student, Cora Jane Thompson, will perform in the Thursday, Dec. 7th, showing and star student, Kristina Penfield, will perform in the Thursday, Dec. 14th showing. Both students will perform in the prime time 7:30pm showing of The Nutcracker at the Ellie Caulkins Opera House, 1101 13th Street in Denver.

Please support Global’s star students and our partner, the Colorado Ballet, by purchasing tickets to The Nutcracker performances on Thursday December 7th and Thursday December 14th at 7:30pm!!

The Global Down Syndrome Foundation’s Be Beautiful Be Yourself Dance Program is made possible by generous grants from the Melvin & Elaine Wolf Foundation, The Daniels Fund, and the Anna and John J. Sie Foundation.

Global is deeply grateful to its program donors and to our partners – the Colorado Ballet and the Sie Center for Down Syndrome at Children’s Hospital Colorado.  Our Be Beautiful Be Yourself Dance Class runs for two seasons a year. Each 16 week season is taught by Colorado Ballet professionals alongside Sie Center physical therapists and educators.  The program provides instruction on ballet movement, music appreciation, rhythm and basic dance steps as well as interpersonal skills, vocabulary and confidence building to students ages 5-14 who happen to have Down syndrome.

The program is designed as both a confidence builder to dance classes with typical peers and as a stand-alone dance class that gives students with Down syndrome the opportunity to make friends who also have the condition.

Over 30% of our students are scholarship recipients – to support the Be Beautiful Be Yourself Dance Class and our students in need, please make a donation today!

Congratulations, Cora Jane and Kristina! We are so proud of how hard you worked to be cast in The Nutcracker!  GOOD LUCK! We know you will SHINE!

 

Colorado Ballet Dancers Mackenzie Dessens and Gregory K. Gonzales with Kristina and Cora Jane

 

Colorado Ballet Studio Company Dancers with Kristina and Cora Jane


Watch our dancers featured on CBS 4 Denver here!


Watch our dancers featured on Colorado’s Best on Fox 31 here!


A SPECIAL THANKS TO OUR PROGRAM SUPPORTERS


 

A SPECIAL THANKS TO OUR PROGRAM PARTNERS


 

A SPECIAL THANKS TO OUR IN-KIND DONORS


Global’s historical hearing in Washington, D.C. soars to 150 million views

November 20th, 2017 by Global Down Syndrome Foundation

Global’s President & CEO highlights video of historic congressional hearing on Down syndrome research reaching over 150 million views

At the annual Be Beautiful Be Yourself Fashion Show, Michelle Sie Whitten encouraged Global’s 1,360 attendees to watch the C-Span coverage of the landmark congressional hearing and to support increased federal funding for research benefiting people with Down syndrome. 

 

  

 

Generous $1 million grant will help establish a much-needed education center at Global’s new international HQ in Denver 

Salah Foundation

Media Contacts:
Kathy Green | kgreen@globaldownsyndrome.org | (720) 280-9725
Anca Call | acall@globaldownsyndrome.org | (720) 320-3832

DENVER – The Global Down Syndrome Foundation (Global) today announced a transformative lead gift of $1 million from The Salah Foundation. Combined with the generous $1 million grant, Global will receive additional matching funds that will help to establish a center in Denver dedicated to educational activities primarily for people with Down syndrome but also for others who are differently-abled.

The gift was unveiled by Noreen Salah Burpee, executive director of The Salah Foundation, at Global’s annual record-breaking Be Beautiful Be Yourself Fashion Show held on Nov. 11, 2017, at the Sheraton Denver Downtown Hotel. The announcement brought a crowd of more than 1,300 including advocates with Down syndrome, their families, friends, supporters, and celebrities Quincy Jones, Jamie Foxx, DeOndra Dixon, Marisa Tomei, Joe Manganiello, John C. McGinley, Matt Dillon and Eva Longoria to their feet.

“We are so grateful for The Salah Foundation and Noreen for making this generous and impactful gift to the Global Down Syndrome Foundation,” said John C. McGinley, award-winning actor and Global board member after hearing the announcement backstage at the fashion show. “The team at Global works hard and is truly delivering for the Down syndrome community. This will allow them to reach even more people.”

“We are thrilled to support the work of the Global Down Syndrome Foundation as they continue to create extraordinary change in the lives of people with Down syndrome and their families,” said Salah Burpee. “We hope that others will follow suit and open their hearts and wallets to this important project.”

The education center will be housed in Global’s new international headquarters in Denver in the Cherry Creek Shopping North – one of the most popular districts in Colorado with the fastest growing foot traffic. It is anticipated that the multi-use education center will provide cooking classes, computer labs and other center-based educational programs for varying ages and abilities and will open sometime in the second half of 2018.

Global supports the research of hundreds of scientists around the world and helped establish the first and only academic home for Down syndrome research at the Crnic Institute for Down Syndrome at the University of Colorado School of Medicine at the Anschutz Medical Campus, with a focus on Alzheimer’s disease, cancer, and autoimmune disorders.

Global funding also helps provide the highest quality of comprehensive medical care to thousands of children with Down syndrome from around the world through the Sie Center for Down Syndrome at Children’s Hospital Colorado, coordinating medical care, along with therapies including speech, physical and occupational therapy.

“We are grateful for the continued support of The Salah Foundation as we advance our mission,” said Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation. “Noreen, Fred, Megan and the whole Salah family have believed in our work, provided us guidance to expand, and now have given us this extraordinary gift that simultaneously increases our impact on people with Down syndrome and helps ensure my parents’ legacy. I can’t tell you how meaningful that is to us.”

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About The Salah Foundation

The Salah Foundation is a private foundation, by invitation only, that supports non-profit organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens. There is a special interest in education, medical research, community development, and self-sufficiency programs aimed at the economically disadvantaged, the young, the elderly and the disabled. To learn more, visit www.salahfoundation.org. 

About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation is at the forefront of research, medical care, education and advocacy dedicated to significantly improving the lives of people with Down syndrome. Supporting the research of hundreds of scientists around the world, and through our advocates, partners, and affiliates including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome, Global is making an impact on the lives of people with Down syndrome today, and remain focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and lead healthy and productive lives. To learn more, visit. www.globaldownsyndrome.org.

The sold-out star-studded event attracted over 1,300 attendees from 22 states and 10 countries

Media Contacts:
Kathy Green | kgreen@globaldownsyndrome.org | 720-280-9725
Anca Elena Call | acall@globaldownsyndrome.org | 720-320-3832

DENVER – The Global Down Syndrome Foundation raised a record $2.6 million for life-changing research and medical care at its 9th annual Be Beautiful Be Yourself Fashion Show held on Saturday, Nov. 11, 2017, at the Sheraton Downtown Denver.

Chaired by Peter Kudla, CEO of Metropolitan Homes Inc., the sold-out event attracted more than 1,300 attendees from 22 states and 10 countries. Music Icon Quincy Jones was on hand to present his namesake award, the “Q Exceptional Advocacy Award” to actress and activist Eva Longoria and to model phenom Madeline Stuart. The fashion show grand finale procession to Quincy Jones’ “We Are the World” brought the audience to its feet.

A roster of impressive celebrities and VIPs including Jamie Foxx, DeOndra Dixon, Marisa Tomei, Joe Manganiello, John C. McGinley, Matt Dillon, Denis O’Hare, Amanda Booth and 2017 Ambassador Marcus Sikora made powerful contributions to the evening.

“This is the fourth year in a row that we have sold out,” said Global President and CEO Michelle Sie Whitten. “It is deeply gratifying to know that so many people care about the terrible lack of funding for Down syndrome research and medical care. Of course, our models with Down syndrome make the event so joyous and inspirational, it has become an annual destination for our families and supporters.”

Global’s Be Beautiful Be Yourself Fashion Show is the single largest fundraiser benefitting people with Down syndrome in the world. The money raised supports critical research conducted by the Crnic Institute for Down Syndrome on the Anschutz Medical Campus and life-saving medical care at the Sie Center for Down Syndrome at Children’s Hospital Colorado. This year’s proceeds add to the over $14 million already raised in the previous eight fashion shows held by Global Down Syndrome Foundation.

“Global’s research funding is already helping us make giant strides in exploring the unique disease spectrum affecting the population with Down syndrome,” said Dr. Joaquín Espinosa, executive director of the Crnic Institute. “We now know that Down syndrome can be understood in large measure as an immune system disorder, which opens the door to find new treatments and therapies, and allows us to better explore the connections that may help cure Alzheimer’s disease.”

Down syndrome is the leading cause of developmental delay and the population of people with the condition is increasing dramatically in the U.S. Yet over the last two decades Down syndrome has been one of the least funded genetic conditions by the federal government, specifically the National Institutes of Health.