Archive for the ‘Media Advisory / Press 2017 and 2018’ Category

DENVER – Wednesday, March 21, 2018 – Gov. John Hickenlooper joined forces with the Global Down Syndrome Foundation (Global) and hundreds of self-advocates, families and community partners to celebrate World Down Syndrome Day at the Colorado State Capitol today.

As part of the annual celebration in Colorado, Hickenlooper signed bill SB 18-096, which eliminates the “R” word (“mentally retarded” and “mental retardation”) and replaces the terms with more appropriate “intellectual and developmental disability” language. The bill was sponsored by Senator Beth Martinez Humenik and Representative Dan Thurlow.

Colorado joins other states and the federal government in putting people first language into law. In 2010, President Barack Obama signed “Rosa’s Law” which removes the terms “mental retardation” and “mentally retarded” from federal law and policy and replaces them with people first language “individual with an intellectual disability” and “intellectual disability.” More than 40 states have followed suit in passing respectful language bills.

“My daughter and millions of others who are differently-abled in this country deserve the same respect and equality afforded any other American citizen,” said Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation. “Words really do matter and they can hurt and discriminate – which is why today is so special as we celebrate not only new language but a new more just perspective as codified by our government.”

Global Affiliates, the Crnic Institute for Down Syndrome at University of Colorado on the Anschutz Medical Campus, the Rocky Mountain Alzheimer’s Disease Center, and the Sie Center for Down Syndrome at Children’s Hospital presented and celebrated with families and partners from across Colorado, including the ARC of Colorado and Arc Thrift, who were in attendance for this historic moment.

Global has long-advocated for inclusive and people first language. Most recently, Global joined the community and petitioned Netflix for anti-disability, anti-Down syndrome rhetoric in a new show called “Disgraceful” that led to the bullying of parents of people with Down syndrome. Actor, Global spokesperson and board member John C McGinley has shown support with a recent editorial to help end the use of “R” the word.

World Down Syndrome Day is a global awareness day which has been officially observed by the United Nations since 2012. The date – March 21 – has special meaning to the Down syndrome community as individuals with Down syndrome have three copies of chromosome 21.

###

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 remains focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and to lead healthy and productive lives. To learn more, visit. www.globaldownsyndrome.org.

Groundbreaking Research Grants announced on World Down Syndrome Day

DENVER – Wednesday, March 21, 2018 – With partisan politics threatening to lead to a government shutdown, First Lady Valerie Sununu (R-New Hampshire) and First Lady Robin Hickenlooper (D-Colorado) have joined forces to celebrate World Down Syndrome Day and to support Down syndrome research.

The two first ladies have organized the Light the Way Campaign to shine a light on the groundbreaking research advances being made to empower individuals with Down syndrome. They have enlisted other first spouses from Arkansas, Indiana, Minnesota, New Mexico, North Caroline, Ohio, Oklahoma, Pennsylvania, Tennessee, Texas, Virginia, West Virginia, Wyoming, where the Governors’ residences or capitols will be decorated in the Down syndrome colors of blue and yellow and proclamations made. The campaign initiative was started in 2011 by Patricia White, a parent-advocate, and former First Lady Mary Pat Christie of New Jersey.

The campaign follows on the heels of the first congressional hearing late last year which was focused on Down syndrome research and the lack of National Institutes of Health funding for the condition. At the hearing the Global Down syndrome Foundation’s Quincy Jones Advocate, Frank Stephens, provided testimony that brought the bi-partisan U.S. House of Representatives Appropriations Subcommittee on Labor, Health and Human Services, and Education to its feet when he exclaimed, “I am a man with Down syndrome and my life is worth living.” Stephen’s testimony on C-SPAN went on to receive over 160 million views.

The two first ladies were deeply moved by Stephen’s testimony and Global’s decade long work with congress to increase funding for Down syndrome research. “I am excited to take on this initiative, as advocating for people with Down syndrome is a main focus of mine as First Lady of New Hampshire,” said Sununu. “We are grateful to Patricia White and former First Lady Christie for starting this important campaign, and we are pleased to have partnered with the leading research non-profit in the field, the Global Down Syndrome Foundation, and we encourage our colleagues to spread awareness for the Light the Way Campaign by using #GlobalLightsTheWay.

“Colorado is proud to support the Light the Way campaign as more can and should be done to support people with Down syndrome,” said Robin Hickenlooper, First Lady of Colorado. “Global has helped the scientific community make giant strides in improving the lives of those with the condition. We know that with additional funding and support, the next breakthrough is just on the horizon.”

To commemorate World Down Syndrome Day in Colorado, Governor John Hickenlooper received hundreds of participants from around the state at the Capitol where Global’s affiliate, the Crnic Institute for Down Syndrome at University of Colorado School of Medicine on the Anschutz Medical Campus announced $800,000 in Grand Challenge Grant Awards to outstanding Down syndrome research that stands to benefit people with Down syndrome.

“The 2018 Grand Challenge Grant Award winners represent some of the best science that exists today,” said Joaquín Espinosa, Executive Director of the Crnic Institute, Director of The Functional Genomics Facility, and Co-Leader of the Molecular Oncology Program at the University of Colorado Cancer Center on the Anschutz Medical Campus. “We are looking at Down syndrome as an immune system disorder and coming up with ways that can lead to improved health outcomes. It is a very exciting time to be engaged in Down syndrome research.”
The Crnic Grand Challenge Grants annual program was established in 2013 by Tom Blumenthal, Ph.D., director emeritus of the Crnic Institute. To date, Global has helped to underwrite more than $6 million in grants to 42 researchers and scientists from Colorado.

This year’s winners are primarily focused on medical research and scientific studies that will benefit people with Down syndrome, while also providing critical research that may benefit the typical population. The 2018 Grand Challenge Grant Award winners include:

Causes and consequences of altered DNA repair in Down syndrome.
Defects in DNA repair could contribute to increased risk of leukemias and premature aging in people with Down syndrome. James DeGregori and Jay Hesselberth will use newly developed technologies to assess how well DNA repair processes work and how often DNA mutations occur in the cells of individuals with Down syndrome.

Impact of trisomy 21 on B cell function in adults with Down syndrome.
People with Down syndrome have an increased susceptibility to bacterial pneumonia and may respond differently to vaccinations, two phenomena with mechanisms rooted in the immune system. Edward Janoff and Stephanie James will evaluate how the immune system of adults with Down syndrome responds to stimuli such as vaccination or bacterial infection, by characterizing B cells, the immune cells that produce antibodies.

Mechanisms of reduced allergic sensitization in Down syndrome.
Richard Lee Reinhardt will explore whether children with Down syndrome have a marked decrease in susceptibility to allergic diseases. He will also test whether increased expression of a specific gene located on chromosome 21, called Runx1, contributes to this decrease in allergic sensitization. This novel work will contribute to the understanding of how allergic diseases develop in ALL people and how to best prevent it.

Role of Interferon and Interleukin-10 in susceptibility to severe pneumonia.
People with Down syndrome have increased rates and severity of pneumonia infection. Michael Yeager will continue his important work understanding how an increase of specific molecules in the immune system, called Interferons and Interleukin-10, contribute to an enhanced susceptibility to pneumonia infection in people with Down syndrome, and also why ALL people are more susceptible to bacterial pneumonia after viral infections like influenza.

Metabolic alterations caused by trisomy 21
The ‘metabolome’ is a collection of small biochemical molecules that act as a ‘fingerprint’ of virtually all cellular processes. In people with Down syndrome, the metabolome is altered and likely contains biomarkers that may help assess risk of and create therapeutic strategies for a variety of diseases with commonly co-occur with Down syndrome. Angelo D’Alessandro will continue to perform experiments to understand metabolic perturbations in people with Down syndrome.

Targeting dysregulated mitochondrial activity in DS-related Alzheimer’s disease.
Charles Hoeffer will continue to explore the role of RCAN1, a protein encoded on chromosome 21, in the development of Alzheimer’s disease. His studies seek to determine how increased expression of RCAN1 alters a cellular structure known as the mitochondria in neurons from people with Down syndrome, and whether RCAN1 could eventually be targeted with drugs to treat Alzheimer’s disease. This work will contribute to a valuable body of literature surrounding the relationship with Alzheimer’s disease and Down syndrome.

World Down Syndrome Day is a global awareness day which has been officially observed by the United Nations since 2012. The date – March 21 – has special meaning to the Down syndrome community as individuals with Down syndrome have three copies of chromosome 21.

###

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 remains focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and to lead healthy and productive lives. To learn more, visit. www.globaldownsyndrome.org.

Babies with Down syndrome take center stage in the US abortion fight

March 5th, 2018 by Global Down Syndrome Foundation

Washington Post

Amid this debate, the Global Down Syndrome Foundation’s Whitten said it is important to separate facts from myths about the condition. . . 
 
But today, thanks to medical advances and better integration into society, many individuals with Down syndrome live long, productive and happy lives. The average life span among people with Down syndrome has more than doubled from 25 years in 1983 to about 60 years, Whitten said. And while most have a mild to moderate range of intellectual impairment, there is wide variation in their abilities, and more and more are living independently, going to college, holding challenging jobs and getting married. . . 
 
Whitten said that one of the biggest challenges people with the condition face is a precipitous drop in research funding over the years from the National Institutes of Health, a decline that, she said, makes Down syndrome the most poorly funded major genetic condition in the United States. . .
 
 

New guidelines aim to address different standards of care and the doubling of life expectancy for individuals with Down syndrome.

DENVER  |  The Global Down Syndrome Foundation announced today the full roster of authors committed to establishing new medical care guidelines for adults with Down syndrome (“Guidelines”). The Guidelines will draw and build upon previous, important work in the field.

“We are pleased and deeply honored to have such an esteemed group of medical practitioners to help launch this much-needed initiative,” said Michelle Sie Whitten, President & CEO of Global Down Syndrome Foundation. “Because of the dramatically different disease spectrum of people with Down syndrome and their ever-increasing life expectancy, it is critical to update and disseminate best care practices for aging adults with Down syndrome.”

People with Down syndrome are born with three copies of chromosome 21 instead of two, which causes them to be highly predisposed to some diseases that tend to manifest in aging populations (e.g. Alzheimer’s disease, autoimmune disorders). Yet they remain highly protected from other diseases (e.g. breast cancer, heart attacks and strokes). Many such diseases manifest in aging populations.

In the U.S., the life expectancy of an individual with Down syndrome has more than doubled in the last three decades, from 25 years in 1983 to 60 years today. The most recent guidelines for adults with Down syndrome were published in 2001 and the years since have been marked by many advancements in the general medical field and important findings specific to the care of adults with Down syndrome.

“I have had the privilege of serving hundreds of adults with Down syndrome and their families,” said Dr. George Capone, research scientist and director of the Down Syndrome Clinic and Research Center (DSCRC) at Kennedy Krieger Institute and associate professor of pediatrics at the Johns Hopkins University School of Medicine. “To be able to utilize my twenty-seven years of medical experience to inform these guidelines is extremely rewarding – and a lot of hard work. We are grateful to Global for helping us fund this, and, equally important, for committing to fund future guideline revisions every five years.”

The team of lead authors collaborating on the Guidelines includes both medical and behavioral experts in adult Down syndrome care representing many of the foremost medical clinics serving the unique needs of this population from across the United States. Authors committed to collaborating with Global’s Medical Care Guidelines for Adults with Down Syndrome are (in alphabetical order):

Lead Authors

  • George Capone (MD)- Director of Down Syndrome Clinic and Research Center, Kennedy Krieger Institute, Associate Professor, John Hopkins School of Medicine, Baltimore, Maryland
  • Brian Chicoine (MD)- Medical Director, Advocate Medical Group Adult Down Syndrome Center, Park Ridge, Illinois
  • Barry Martin (MD)- Assistant Professor, Division of General Internal Medicine, University of Colorado School of Medicine,, Former Medical Director of the Denver Adult Down Syndrome Clinic, Denver, Colorado
  • Dennis McGuire (PhD, LCSW)- Behavioral Expert for Adults with Down syndrome, Global Senior Consultant, former Director of Psychosocial Services, Adult Down Syndrome Clinic, Advocate Lutheran General Hospital, Park Ridge, Illinois
  • Kent McKelvey (MD)- Director of Adult and Cancer Genetics Services, University of Arkansas for Medical Sciences, Director of Winthrop P. Rockefeller Multidisciplinary Clinic for Adults with Down syndrome, Little Rock, Arkansas
  • Moya Peterson, (PhD, APRN)- Director of Adults with Down Syndrome Specialty Clinic, University of Kansas Medical Center, Kansas City, Kansas
  • Carl Tyler (MD, MSc, ABFP, CAQ-Geriatrics)- Director of the Developmental Disabilities – Practice-Based Research Network (DD-PBRN), Practitioner at the Cleveland Clinic, Specializes in geriatrics and adults with I/DD, Cleveland, Ohio

Co-Authors

  • Peter Bulova (MD)- Director of University of Pittsburgh Adult Down Syndrome Center, Pittsburgh, Pennsylvania
  • Bryn Gelaro (LSW)- Director of Adult Initiatives and Special Projects, Global Down Syndrome Foundation, Denver, Colorado
  • Michael Wells (BS)- Research Coordinator for the Developmental Disabilities – Practice-Based Research Network (DD-PBRN), Cleveland, Ohio

The authors will work with Global and ECRI Institute, a non-profit group of statisticians and PhDs specializing in guideline creation, to produce a set of guidelines by the end of 2019. The collaborators hope to have the Guidelines published in medical journals and have committed to ensuring the Guidelines be accessible and free-of-cost to self-advocates, physicians, family members, caretakers, Down syndrome organizations, and others who would benefit from such Guidelines.

“Creating adult guidelines is intimidating because of their importance and because we realize data is likely sparse in certain areas but we are excited to take on the challenge and build this,” said Kent McKelvey, M.D., Associate Professor and Director of Adult and Cancer Genetics Services at University of Arkansas for Medical Sciences. “With this project, we will systematically gather data and then have opportunity to debate and apply decades of combined clinical experience in Down syndrome care to provide educated guidance. We must acknowledge the gaps found and then embrace the need for more research. We must eventually get a playbook into the hands of parents and medical professionals to improve the physical and mental health of with Down syndrome.”

Global has committed to translating the Guidelines into multiple languages and to updating the Guidelines every five years. To date, 36 different local Down syndrome organizations and over 50 individuals have provided and pledged financial support towards the Guidelines, with the rest of the funding being provided by Global Down Syndrome Foundation.

###

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 Linda 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 remains focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and to lead healthy and productive lives. To learn more, visit www.globaldownsyndrome.org.

DENVER  |  The Global Down Syndrome Foundation announced today that it has translated important prenatal testing information into Icelandic and provided the resource to the Icelandic Down Syndrome Association. The translation is a first step to support the association’s efforts in providing accurate information about Down syndrome to pregnant women and families in Iceland.

Global and the National Down Syndrome Congress (NDSC) offered to provide the translation of their recently published Prenatal Testing & Information About Down Syndrome following a CBS news report in August about the termination rates of Down syndrome pregnancies in Iceland.

According to the report, “Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 percent — who received a positive test for Down syndrome terminated their pregnancy.” In actuality, from 2007 to 2015, nearly 85% of pregnant women opted for Down syndrome screening and, of those who received an amniocentesis resulting in a positive test result for Down syndrome, 100% terminated.

The best available statistics in the U.S. are that an estimated 67 percent of women who receive an amniocentesis resulting in a positive test result for Down syndrome choose to terminate their pregnancies. But more than 95 percent of pregnant women don’t even elect to receive an amniocentesis.

“The high termination rates in Iceland are alarming,” said Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “Every woman and every pregnancy is unique, but every woman should be given the facts including examples of how people with Down syndrome can and are contributing to society and reaching their potential. In the U.S. the situation is very different than Iceland – there is actually a population explosion of people with Down syndrome because of increased births and a more than doubling of the lifespan. Our problem is that funding for research and medical care has declined precipitously over the last two decades and we need to change that.”

“Global has been such a great partner to work with on our prenatal testing pamphlet and we are so pleased to offer it in Icelandic,” said David Tolleson, Executive Director of the NDSC. “The NDSC is offering scholarships to families from Iceland to attend our national convention in July of this year, and we believe it will serve as a great resource for people from Iceland to bring some best practices back to their country. We also look forward to learning from our colleagues in Iceland.”

“We appreciate Global and NDSC for extending support to the Down syndrome community in Iceland. Their generosity and moral support is very important for a small society as ours. And how wonderful to be part of this larger Down syndrome family, all sharing the same beliefs and hopes for people with Down syndrome,” said the Icelandic Down Syndrome Association President, Thordis Ingadóttir.

Watch C-Span cover the 5-minute testimony of Global Down Syndrome Foundation’s Quincy Jones Award Advocate, Frank Stephens, about Iceland and the future of people with Down syndrome.

Below are several trends associated with Down syndrome based on data in the United States:

  • Population – ranges between 230,000-430,000
  • Live Births – have increased to 1 in 691 today from 1 in 1,000 in 2002
  • Lifespan –There have been great strides in medical care and lifespan has more than doubled to 60 years from 28 years in the 1980s
  • Low Government Funding – Despite being the leading cause of developmental delay in the U.S. and the world, Down syndrome is one of the least funded genetic conditions by the National Institutes of Health (NIH) and has been since 2001.
  • Education – By law, people with Down syndrome must be provided a free, appropriate education through their public school system.
  • Societal Trends – A small but growing number of people with Down syndrome are choosing to live independently, participate in post-secondary education or college programs, and get married.

For the most current, accurate information and resources associated with people with Down syndrome visit www.globaldownsyndrome.org/facts. 

###

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 remains focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and to lead healthy and productive lives. To learn more, visit www.globaldownsyndrome.org.

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.

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.”

###

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.

WASHINGTON – The Global Down Syndrome Foundation thanked Chairman Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT) for scheduling a hearing on Down syndrome research with the U.S. House of Representatives Appropriations Subcommittee on Labor, Health and Human Services, and Education. The hearing will take place on Wednesday, October 25, 2017. Titled “Down Syndrome: Update on the State of the Science & Potential for Discoveries Across Other Major Diseases,” the hearing will be the first Congressional hearing to explore how Down syndrome research can lead to new treatments for life-altering medical conditions including Alzheimer’s disease, autoimmune disorders, and cancer. The hearing will include testimony from Rep. Cathy McMorris Rodgers (R-WA), Rep. Cheri Bustos (D-IL), and Rep. Pete Sessions (R-TX), all champions for Down syndrome research funding in Congress.

“Funding for Down syndrome research at the National Institutes of Health unquestionably affects the health of people with Down syndrome,” said Global Down Syndrome Foundation President & CEO Michelle Sie Whitten. “This important hearing will explore how current and future Down syndrome research can help people with Down syndrome and lead to life-changing treatments for devastating diseases like Alzheimer’s and cancer. We are grateful to Chairman Tom Cole and Ranking Member Rosa DeLauro for scheduling this important hearing so Congress can learn more about the broad impact of Down syndrome research for millions of people who live with this particular condition, and for countless others who can benefit from the groundbreaking medical treatments that will develop as a result.”

“The advocacy efforts of Rep. Cathy McMorris Rodgers, Rep. Cheri Bustos, and Rep. Pete Sessions have been instrumental in advancing Down syndrome research,” Whitten continued. “Their testimony will underscore the need to increase funding so we can continue these important efforts for people with Down syndrome and their families.

The Subcommittee will also hear testimony from internationally recognized researchers and leaders from the Down syndrome community including:
 
Michelle Sie Whitten, Founder, CEO, and President of the Global Down Syndrome Foundation
 
Dr. Joaquín M. Espinosa, Executive Director of the Linda Crnic Institute for Down Syndrome and Director of The Functional Genomics Facility, University of Colorado School of Medicine, and Co-Leader of the Molecular Oncology Program at the University of Colorado Cancer Center

Dr. William Mobley, Executive Director of the Down Syndrome Center for Research and Treatment, and Florence Riford Chair of Alzheimer’s Disease Research, University of California – San Diego

Frank Stephens
Actor, Author and Advocate, Board of Directors of Special Olympics Virginia

Additional information can be found on the House Committee on Appropriation web site.

Read more about the Global Down Syndrome Foundation here: https://www.globaldownsyndrome.org/

Media Contact
Name: Ed Mullen
Email: emullen@georgetowngroup.com
Phone: (202) 329-4855

Anca Call
Email: Acall@globaldownsyndrome.org
Phone: (720) 320-3832

Follow on Twitter at: https://twitter.com/GDSFoundation
Follow on Facebook at: https://www.facebook.com/GDSFoundation/

SOURCE Global Down Syndrome Foundation

Related Links

https://www.globaldownsyndrome.org/

https://appropriations.house.gov/calendar/eventsingle.aspx?EventID=395058

CONGRESSIONAL HEARING

October 24th, 2017 by Global Down Syndrome Foundation

Hearing DC 

 

 

WATCH CLIP: Frank Stephens
Quincy Jones Advocate, Global Down Syndrome Foundation  

WATCH CLIP: Michelle Sie Whitten
President & CEO Global Down Syndrome Foundation
Executive Director Anna & John J. Sie Foundation

   WATCH CLIP: Joaquín Espinosa, PhD
Professor of Pharmacology, University of Colorado Denver School of Medicine, Co-Lead, Molecular Oncology Program and University of Colorado Cancer Center, Executive Director, Linda Crnic Institute for Down Syndrome

WATCH CLIP: Cathy McMorris Rodgers (R-WA)
Congresswoman from Washington, House Republican Conference Chair

View Photos From The Event!

 

Wednesday, October 25, 2017  |   Washington, DC

Down Syndrome: Update on the State of the Science & Potential for Discoveries Across Other Major Diseases

The U.S. House of Representatives Appropriations Subcommittee on Labor, Health and Human Services, and Education, which provides federal funding for the National Institutes of Health, held the first ever hearing on current and future research funding priorities to accelerate scientific discovery that will benefit individuals with Down syndrome and lead to new therapies to treat Alzheimer’s disease, cancer, and other major diseases. 

The subcommittee listened to testimony from senior Members of Congress, internationally recognized researchers, and leaders from the Down Syndrome Community.  This represents an important opportunity to build congressional support for increased federal funding for Down syndrome research.

PANEL ONE:

               Rodgers

Rep. Cathy McMorris Rodgers
Congresswoman from Washington (R-WA) House Republican Conference Chair

Bustos

Rep. Cheri Bustos
Congresswoman from Illinois
(D-IL) Co-Chair of the Democratic Policy and Communications Committee

Sessions

Rep. Pete Sessions
Congressman from Texas
(R-TX) Chair of the House Rules Committee

 

PANEL TWO:

Whitten

Michelle Sie Whitten, MA 
President & CEO
Global Down Syndrome Foundation
Executive Director
Anna & John J. Sie Foundation

Mobley

Dr. William Mobley
Executive Director, Down Syndrome Center for Research and Treatment, and Florence Riford Chair of Alzheimer’s Disease Research, UC San Diego

Espinosa

Dr. Joaquín Espinosa, Professor of Pharmacology, University of Colorado Denver School of Medicine, Co-Lead, Molecular Oncology Program and University of Colorado Cancer Center, Executive Director, Linda Crnic Institute for Down Syndrome

Stephens

Frank Stephens,
Quincy Jones Advocate, Global Down Syndrome Foundation