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

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. 

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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.

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 

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.

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

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:

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

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

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

 

PANEL TWO:

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

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

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

Frank Stephens, Quincy Jones Advocate, Global Down Syndrome Foundation

$2.5 million initial commitment to launch project

DENVER –The Global Down Syndrome Foundation today announced that Biogen, a neuroscience leader has joined the Global Down Syndrome Foundation and the University of Colorado School of Medicine in a groundbreaking project that explores the connection between Alzheimer’s disease and Down syndrome.

The Crnic Institute Human Trisome Project^TM (HTP) is an ambitious longitudinal and cross-sectional study that will recruit 1,000 individuals with Down syndrome (also known as Trisomy 21) and 500 typical individuals. Scientists and clinicians will sequence and study several layers of genomics information (all de-identified) from a single sample of blood. Saliva, stool and other samples are also being collected. The Crnic Institute HTP has already begun to significantly increase the speed of Down syndrome research and has enrolled nearly 300 participants in the first 11 months.

“People with Down syndrome have a different disease spectrum,” said Dr. Joaquín Espinosa, executive director of the Crnic Institute, and the principal investigator of the Crnic Institute HTP. “The Crnic Institute HTP will allow us to redefine Down syndrome from the least scientifically understood condition to one of the best understood conditions. In addition, it will provide unprecedented understanding of Alzheimer’s disease, autoimmune conditions, cancers and other medical conditions that people with Down syndrome are either very predisposed to or protected from, eventually enabling the development of new diagnostic and therapeutic tools.”

“This research will serve first and foremost people with Down syndrome, but also the millions of individuals without Down syndrome who are affected by the many medical conditions modulated by trisomy 21,” said Espinosa.

Biogen has committed more than $500,000 and additional in-kind resources to the Crnic Institute HTP to investigate the genome and epigenome of specific cell types in the blood that could inform the development of Alzheimer’s disease. This initial investment is being financed with funds from Biogen and $1 million from the University of Colorado School of Medicine at the Anschutz Medical Campus – home to the Linda Crnic Institute for Down Syndrome – with a matching gift of $1 million from the Global Down Syndrome Foundation.

“Down syndrome is still one of the least funded genetic conditions of the federal government, so we are extremely grateful for the commitment from CU and Biogen,” said Michelle Sie Whitten, president & CEO of the Global Down Syndrome Foundation. “This is just the beginning as we hope to attract other biopharmaceutical organizations and philanthropists committed to improving the lives of people with Down syndrome and other conditions.”

“The School of Medicine provides a home for outstanding biomedical research that leads to improved care for all,” said Dr. John J. Reilly, Jr., vice chancellor for health affairs and dean of the University of Colorado School of Medicine. “We are confident that this investment will have a significant impact on our understanding of the health of people with Down syndrome and that it will lead to discoveries informing the care we provide.”

“Our son is 38 years old and we are concerned that he may get Alzheimer’s,” said Jack and Penni Dorwart, whose son participated in the Crnic Institute HTP.  “We also know that if we have high- quality research that there is the potential to significantly improve not only our son’s life but millions of others with Down syndrome who have many other medical issues that prevent good quality of life. That is why we participated in this study and we encourage others to do the same. We are grateful to the Crnic Institute and the Global Down Syndrome Foundation for taking on this difficult work and advocating for our children and adults.”

Learn more about in the Crnic Institute Human Trisome Project^TM or sign up to participate in the study.

During Down Syndrome Awareness Month celebrities vow to raise awareness for life-changing research in support of the foundation’s fundraiser next month in Denver

DENVER – Tuesday, Oct. 10, 2017

Today the Global Down Syndrome Foundation announced its initial celebrity lineup for this year’s 9^th annual Be Beautiful Be Yourself Fashion Show, the single largest fundraiser for Down syndrome research in the country, which will be held on Saturday, Nov. 11, 2017 at the Sheraton Denver Downtown Hotel, 1550 Court Place in Denver.

Models with Down syndrome, such as 2017 Global Down Syndrome Foundation Ambassador Marcus Sikora, will be joined on the Be Beautiful Be Yourself Fashion Show runway by celebrities including:  Joe Manganiello, Star of True Blood and Magic Mike, Marisa Tomei, Oscar Winning Actress,  John C. McGinley, Actor, Author, Comedian and Global Board Member, and Denis O’Hare, Tony Award-winning Actor and Star of True Blood. Additional special guests will be announced in the coming weeks.

“This is a special year for Global as we have had two major scientific breakthroughs that are a direct result of the donations we have raised at our fashion show in past years,” said Global Down Syndrome Foundation President, CEO and Co-Founder, Michelle Sie Whitten. “We are thrilled to celebrate how far we have come and inspired to look towards the future in gathering additional awareness and support for a significantly better future for children and adults with Down syndrome.”

Over the past 8 years, the Be Beautiful Be Yourself Fashion Show has raised more than $14 million for the Global Down Syndrome Foundation to support life-changing and life-saving research, medical care, education and advocacy. Specifically, the foundation has supported world-class multi-disciplinary medical care to more than 1,300 children with Down syndrome from 28 states and seven countries. The funding has also helped to establish the first academic home for revolutionary Down syndrome research, with a focus on Alzheimer’s disease, cancer and autoimmune disorders.

Various levels of tickets, table sponsorships, and model sponsorships are available, including VIP levels at www.bebeautifulbeyourself.org.

For more information on the Global Down Syndrome Foundation, please visit www.globaldownsyndrome.org. For celebrity interviews, to cover the Be Beautiful Be Yourself Fashion Show or to receive additional information and imagery, please contact trisha@ballantinespr.com.

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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.

Kathy Green | kathygreen@globaldownsyndrome.org | (720) 280-9725
Anca Call | acall@globaldownsyndrome.org | (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.

DENVER
Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation released the following statement today regarding the recent CBSN story on ‘eradicating’ Down syndrome in Iceland:

“It’s heartbreaking to see what is happening in Iceland today, and shocking to see that this level of misinformation and discrimination against people with Down syndrome still exists. While every mother and every pregnancy is unique, the fact is those born with Down syndrome can and do live long, happy and productive lives. Women making these critical decisions need to have the facts.

Educating the medical community and pregnant women with accurate and current information about Down syndrome is imperative. Global Down Syndrome Foundation and the National Down Syndrome Congress recently updated their Prenatal Testing Pamphlet for pregnant women and health providers about what to expect with a prenatal diagnosis of Down syndrome. This information is free and available in English and Spanish.

The situation in Iceland is a reminder of how important it is that Global continues to invest in medical care, education and advocacy, and that we continue to advance the world class research that is helping us better understand Down syndrome,” said Whitten.

In addition, below are specific facts about the condition in the United States:

• Lifespan – Today, the average lifespan of a person with Down syndrome is nearly 60 years.
• Termination Rates – 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 over 95 percent of pregnant women don’t even elect to receive an amniocentesis.
• Medical Care & Research – There have been great strides in medical care and research that have doubled the lifespan of people with Down syndrome over the last 30 years.
• Educational Opportunities – People with Down syndrome are included in public schools. Many complete high school, and increasing numbers are going to college or get vocational training.
• Voting & Employment – Many people with Down syndrome work, volunteer and vote.
• Marriage, Siblings & Self-advocates – Despite potential challenges, personal accounts and studies show most families that have a child with Down syndrome are stable, successful and happy, and that siblings often report having increased levels of compassion and empathy. One major study on marriages and Down syndrome shows that the divorce rate among parents of children with Down syndrome is lower than the national average.

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