Archive for March, 2018

The Retromer Complex and Sorting Nexins in Neurodegenerative Diseases

March 26th, 2018 by Global Down Syndrome Foundation

AcceptAbility Slider

March 24th, 2018 by Global Down Syndrome Foundation

Uganda celebrates World Down Syndrome Day 2018!

March 23rd, 2018 by Global Down Syndrome Foundation

Global was proud to join forces with the Global Livingston Institute to bring local organizations, families and children with Down syndrome together in Uganda’s capitol city of Kampala to celebrate World Down Syndrome Day! The theme of the event was social inclusion, and over 300 people came out to celebrate and create awareness about Down syndrome. Other organizations based in Uganda that came together to make the day a success included EmbraceKulture, Children’s Clinic Naalya, The Uganda Down Syndrome Association, and Angel’s Center for Children with special needs. Way to go GLI Team on an impactful WDSD Uganda 2018!

Other related press & videos highlighting Down syndrome in Uganda and the work of local organizations involved:

NBS Interview – Rosemary Nambooze & Dr. Daniel Tumwine


NBS Interview – Daphine Murungi


NTV Article – Daphine Murungi Feature


NTV Article – Olivia / EmbraceKulture Feature


The Monitor – Rosemary Article

 

Global Down Syndrome Foundation Applauds Congressional Champions and Looks Forward to Partnering with the Trans-NIH Down Syndrome Initiative

DENVER – Thursday, March 22, 2018 – The Global Down Syndrome Foundation applauds Congress for including funding for a new trans-National Institutes of Health (NIH) initiative to study Down syndrome in the final Fiscal Year 2018 Omnibus Appropriations legislation that is expected to pass this week. The provision, supported by the Global Down Syndrome Foundation, directs the NIH Director to lead a groundbreaking new scientific initiative to study immune system dysregulation and trisomy 21, with the aim of yielding research discoveries to improve the health of individuals with Down syndrome and typical individuals at risk for Alzheimer’s disease, cancer, cardiovascular disease, and autism, among others.

“Today’s action marks a significant advance in our efforts to improve the lives of individuals with Down syndrome as well as millions of other Americans,” said Michelle Sie Whitten, President, CEO, and Co-Founder of the Global Down Syndrome Foundation (Global). “We applaud our bipartisan allies in Congress especially the leadership of Appropriations Subcommittee Chairs Tom Cole (R-OK) and Senator Roy Blunt (R-MO) and Ranking Members Representative Rosa DeLauro (D-CT) and Senator Patty Murray (D-WA) as well as Representatives Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), Mike Coffman (R-CO) and Cheri Bustos (D-IL).”

Last year, the Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, which provides federal funding for the NIH, held the first ever hearing on current and future research funding priorities for people with Down syndrome. The Subcommittee heard testimony from experts including Whitten, her colleague Dr. Joaquín M. Espinosa, Executive Director of the Linda Crnic Institute for Down Syndrome on the Anschutz Medical Campus, and Frank Stephens, a Global Quincy Jones Award Recipient and Advocate.

People who have three copies of chromosome 21 (instead of two) have Down syndrome, also known as trisomy 21. The additional copy of this small human chromosome leads to a radically different disease spectrum for people with Down syndrome whereby they are predisposed to or protected from major diseases that are the cause of death for over of 50% of Americans. For example, people with Down syndrome face an extraordinarily high prevalence of Alzheimer’s disease and a high prevalence of autoimmune disease and childhood leukemia. Conversely, they are protected against heart attack and solid cancers such as breast cancer or prostate cancer.

Recent, scientific research funded by Global and led by Dr. Espinosa, called the Crnic Institute Human TrisomeTM project, has led to a transformative discovery. Specifically, Dr. Espinosa’s lab found a continuous dysregulation of the immune system in all people with Down syndrome which may explain much of the different disease spectrum observed in this population. The new trans-NIH initiative – which will include the National Cancer Institute, the National Institute on Aging, and the National Institute for Child Health and Human Development – will help accelerate efforts to quickly build upon these findings and fuel new therapeutic discoveries that will improve the health of people with Down syndrome and millions of others.

Global is thrilled to know that its decade-long campaign to educate our government and invest in science has helped lead to this new development. Global looks forward to being a resource and working with the NIH as this initiative takes shape. This represents an amazing milestone for federal research on Down syndrome and our members and advocates join us in thanking Congress for making this a reality.

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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.

Light the Way 2018

March 22nd, 2018 by Global Down Syndrome Foundation

Global is so grateful to First Lady Valerie Sununu of New Hampshire and First Lady Robin Hickenlooper of Colorado for chairing the Light the Way Campaign, an initiative started in 2011 by First Lady Mary Pat Christie of New Jersey to shine a light on the groundbreaking advances being made to empower individuals with Down syndrome! We are honored to have partnered with First lady Sununu and First Lady Hickenlooper to highlight Global’s initiatives that are making a difference for people with Down syndrome throughout the country.

On the evening of Wednesday, March 21st as part of the Light the Way campaign, New Hampshire and Colorado lit the Governor’s Residences in blue in recognition of Down syndrome research. This date has particular significance as Down syndrome results from the presence of three copies of chromosome 21. Below are all the participating states from 2018!

Colorado
New Hampshire
New Jersey
North Carolina
Oklahoma
Virginia
Wyoming
Minnesota
New Mexico
Ohio
Tennessee
Texas
West Virginia
Arkansas
Indiana
Pennsylvania
Illinois
Kansas
Maryland
Wisconsin
Montana
Puerto Rico

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.

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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.

Día Mundial del Síndrome de Down

March 21st, 2018 by Global Down Syndrome Foundation

World Down Syndrome Day (Skip to 2:15)

March 21st, 2018 by Global Down Syndrome Foundation

‘R’ Word Banned From State Statutes On World Down Syndrome Day

March 21st, 2018 by Global Down Syndrome Foundation

Celebrating World Down Syndrome Day

March 21st, 2018 by Global Down Syndrome Foundation