Awardees Announced at the National Down Syndrome Congress Annual Convention Include Nine Organizations from the US and Abroad

This year, the Global Down Syndrome Foundation (Global) awarded $75,000 to nine of its member organizations, bringing the total given through its Educational Grants program to over $550K. Since 2012, Global has awarded grants to 60 innovative educational programs developed by local, national and international Down syndrome organizations. This year’s grants will fund programs in California, Maryland, Missouri, New York, Texas, Virginia and Albania. The grant awards were announced at the NDSC Annual Convention, which attracted nearly 4,000 attendees in Dallas, Texas.

“Global member organizations are working hard every day in their communities and making a difference to thousands of people with Down syndrome,” said Michelle Sie Whitten, President & CEO of Global. “We are honored to be able to acknowledge their efforts by offering $10,000 grants to several members each year, and by empowering them to launch really wonderful programs. I’m sure this year’s awardees will continue to make everyone proud.”

The 2018 Global Educational Grant recipients and their funded programs are (in alphabetical order):

1. ACDS (Plainview, NY) “Breakfast Club” will provide free informational material to children and adults with Down syndrome, their parents, caretakers and professionals. Topics anticipated include developing a support system, potty training, advocacy, using technology, managing challenging behavior and more.

2. The Cedars of Marin (Ross, CA) “Healthy Living Education Program” will help educate the residents and day program participants at Cedars about health and wellness. The program will offer engaging learning activities for participants with the goal of improved nutrition and physical activity.

3. Down Syndrome Albania Foundation (Tirana, Albania) “The ABC of Inclusion” will promote the best practices for inclusive education by exchanging experiences and strategies on functioning and development from three Balkan countries: Albania, Kosovo and Macedonia. The program will also help increase the quality of inclusive education by improving the curriculum for first grade students.

4. Down Syndrome Association of Greater Richmond (Richmond, VA) “Moving On!” is an adult program that will develop key skills needed to explore the possibility of living independently for adults with Down syndrome. It will teach the life skills needed to live independently in their current family home and how to become equal contributors to their household or in the community.

5. Down Syndrome Association of Greater St. Louis (St. Louis, MO) “Silver Steps: Support Services for Caretakers of Aging Adults with Down Syndrome” will expand upon the current Silver Steps program to provide a series of workshops offering concrete resources and services for caregivers.

6. Down Syndrome Guild of Dallas (Richardson, TX) “First Call” program will provide training to parents who have a child with Down syndrome to talk with and mentor new families expecting a child with Down syndrome.

7. Down Syndrome Network of Montgomery County (Rockville, MD) “Techniques for Success” is a yearly conference providing education strategies for students from preschool to high school with Down syndrome. Attendees include general and special education professionals, paras, administrators and home schooling parents.

8. Down Syndrome Partnership of North Texas (Fort Worth, TX) “NetSmartz: Staying Safe with Social Media” will use a hands-on curriculum to teach individuals with Down syndrome, parents, caregivers and professional educators about online/social media safety. It will use a version of NetSmartz that has been adapted to appeal to and educate individuals with Down syndrome and other IDDs.

9. GraceSigns (Tiburon, CA) “Sign Me a Sentence” will be new app available to children with Down syndrome and other IDDs with a focus on teaching approximately 20 key phrases in sign language in verbal and auditory form.

“The value proposition for being a Global member is really high for us,” says Terri Lancaster, Executive Director of Down Syndrome Association of Greater Richmond. “Our membership dues help underwrite Global’s important research and medical care benefitting people with Down syndrome. It also allows us to apply for Global’s Membership Grant Program. In 2013, we received a grant to fund our education class serving 48 participants. Today that same program has three class options with 95 participants!”

“We are so excited to receive another Global Membership Grant. The support from Global allows us to create effective and engaging mobile learning apps for individuals with Down syndrome. The grant for our first app, Sign Me A Story, which is currently being updated, helped us achieve nearly 100,000 downloads worldwide,” says Valerie Carter, Executive Director of GraceSigns. “This year, we’re thrilled to have just launched Sign Me ABCs and have lately begun production of a new app to be released in 2019. We appreciate Global as a true capacity-building partner for change.”

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About Global
Established in 2009, Global Down Syndrome Foundation (Global) is a non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Global is part of a network of affiliates who work together to deliver on our mission, supporting hundreds of scientists and medical care professionals. Our affiliates include the Sie Center for Down Syndrome, the Crnic Institute for Down Syndrome, Rocky Mountain Alzheimer’s Disease Center and a new pilot Adult Clinic. For more information, visit globaldownsyndrome.org and follow us on social media (Facebook, Twitter @GDSFoundation, Instagram @globaldownsyndrome).

About Global’s Membership Grant Programs
Global is proud to count over 750 members made up of individuals and 100 local, state, national, and international Down syndrome organizations. Membership dues for Down syndrome organizations cost $150-500 annually, depending on the organization’s annual revenue. One of the advantages of Global membership is access to its two competitive grant programs. The Self-Advocate Employment Initiative Grants help organizations hire or extend employment to employees with Down syndrome. Educational Grants assist in funding innovative programs for education professionals, self-advocates, medical professionals, parents and caregivers and beyond. To learn about other member benefits and to become a member please visit the membership page.

Rejena Carmichael
Global Down Syndrome Foundation
240-603-5494
rejena.consultant@globaldownsyndrome.org

Anca Elena Call
Global Down Syndrome Foundation
720-320-3832
acall@globaldownsyndrome.org

FOR IMMEDIATE RELEASE
Ed Mullen | emullen@georgetowngroup.com | 202-329-4855
Kathy Green | kgreen@globaldownsyndrome.org | 720-280-9725
Anca Elena Call | acall@globaldownsyndrome.org | 720-320-3832

CONGRESS AND THE NATIONAL INSTITUTES OF HEALTH PRIORITIZE DOWN SYNDROME RESEARCH FUNDING IN 2018 BUDGET

Chairman Tom Cole Announces Historic NIH Budget Increase at the Global Down Syndrome Foundation AcceptAbility Gala

DENVER (May 25, 2018) — After years of advocacy, the Global Down Syndrome Foundation, its research affiliate, the Linda Crnic Institute for Down Syndrome, and its nationwide network of dedicated members and self-advocates are celebrating House Labor and Health and Human Services Appropriations Subcommittee Chairman Tom Cole’s (R-OK) announcement of a historic and significant 65% increase of Down syndrome research funding at the National Institutes of Health (NIH) from $35 million in FY2017 to $58 million in FY2018.

“Global, the Crnic Institute, and our amazing community have worked tirelessly to grow support in Congress to address two decades of decreased and flat funding for Down syndrome research at the NIH,” said Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation. “Having the increase announced at our inaugural AcceptAbility Gala was like a life’s worth of work coming to fruition. We are deeply grateful to our heroes in this regard – Representatives Tom Cole, Rosa DeLauro, Cathy McMorris Rodgers, Pete Sessions, Nita Lowey, Cheri Bustos, Mike Coffman, Senator Roy Blunt, and countless others who regardless of political affiliation, support a brighter future for our children and adults with Down syndrome.”

The historic increase for Down syndrome research funding at the NIH was announced by House Appropriations Labor, Health and Human Services, Education and Related Agencies Subcommittee Chairman Tom Cole (R‐OK) when he received Global’s Quincy Jones Exceptional Advocacy Award at the recent AcceptAbility Gala in Washington D.C.

“The pipeline of science and medical care that the Global Down Syndrome Foundation has established is admirable and worthy of some introspection regarding past funding levels,” said Congressman Cole. “Dr. Francis Collins, the director of NIH, agrees. To his credit, they have already begun the trans-NIH Down syndrome research initiative to address this incredibly challenging, but incredibly promising science.”
Congressman Cole received a standing ovation when he stated, “This year, 2018, we will increase funding by 65 percent. We will move up from 35 to 58 million dollars.”

Ranking Member Rosa DeLauro (D-CT) also received Global’s Quincy Jones Exceptional Advocacy Award at the AcceptAbility Gala and was pleased to share that a bipartisan Congress was working on behalf of the Down syndrome community.

“While Down syndrome is one of the most common chromosomal disorders, NIH funding for Down syndrome research remains low,” said Congresswoman DeLauro in her acceptance speech. “We can and must do better! That’s why I am proud we have provided $3 billion more to the NIH than last year, and to join the fight along with Tom Cole for funding for Down syndrome funding at the NIH.”

Congresswoman DeLauro recognized Whitten’s leadership resulting in Global’s enormous impact on individuals with Down syndrome.

Both Representatives Cole and DeLauro mentioned the October 2017 Labor HHS Subcommittee first-ever congressional hearing on Down syndrome research. Whitten and Global’s spokesperson and self-advocate Frank Stephens testified at the landmark hearing that garnered unanimous bi-partisan support and follow-on report language for increased Down syndrome research funding in the 2018 omnibus budget. Stephens’ testimony on C-SPAN went viral and received over 160 million views.

Dr. Joaquín Espinosa, executive director of the Linda Crnic Institute for Down Syndrome, also testified at the hearing and presented his findings from the institute’s groundbreaking research, the Crnic Institute Human Trisome ProjectTM, that recasts Down syndrome as an immune system disorder.

Dr. Espinosa was elated by the news of increased NIH funding for Down syndrome research. “This is a game-changer for so many scientists eager to help people with Down syndrome and fascinated by the compelling science,” said Espinosa. “By understanding trisomy 21, we stand to improve the lives of millions of people with Down syndrome and hundreds of millions more with Alzheimer’s disease, cancer, and autoimmune disorders. We are deeply grateful to Congress and the leadership at NIH.”

Other dignitaries attending Global’s AcceptAbility Gala were Representatives Ron Estes (R-KS), Sheila Jackson Lee (D-TX), Hank Johnson Jr (D-CA), and Jared Huffman (R-CA). Key sponsors included PhrRMA, American Express, Amgen and Genentech and guests enjoyed special performances by Global Ambassador DeOndra Dixon, Robert Wallop, the RhythmXpress dance troupe and The Voice winner and Grammy nominee, Cassadee Pope.

Despite being the most frequent cause of developmental delay in the U.S. and the world, Down syndrome has been one of the least funded genetic conditions by the NIH for the last two decades. The Global Down Syndrome Foundation and its affiliate, the Crnic Institute for Down Syndrome, through private sector philanthropic support, has invested over $40 million in research and medical care benefiting people with Down syndrome.

About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (Global) is at the forefront of research, medical care, education and advocacy benefitting people with Down syndrome. Global supports the research of hundreds of scientists around the world and has launched pediatric and adult medical centers for people with Down syndrome focused on excellent care and clinical research. Through our advocates, members, partners, and affiliates including the Linda Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome, we are making an impact on the lives of people with Down syndrome today, while remaining focused on finding solutions for tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and lead healthy and productive lives. For more information, visit www.globaldownsyndrome.org and follow us on Facebook & Twitter @GDSFoundation.

About the Linda Crnic Institute for Down Syndrome
The Linda Crnic Institute for Down Syndrome on the Anschutz Medical Campus is the first and only research institute in the U.S. 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 an affiliate of the Global Down Syndrome Foundation and 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. It is a research and medical-based organization without political or religious affiliation or intention.

PRESS RELEASE

FOR IMMEDIATE RELEASE
Ed Mullen | emullen@georgetowngroup.com | 202-329-4855
Anca Elena Call | acall@globaldownsyndrome.org | 720-320-3832

Global Down Syndrome Foundation Testifies at the FY2019 Public Witnesses Hearing and Thanks House Subcommittee on Labor, Health and Human Services, Education and Related Agencies

Testimony focuses on reversing two decades of decreased and flat funding and positive new language in the 2018 Omnibus Bill

WASHINGTON, D.C. – Thursday, April 26th – The Global Down Syndrome Foundation (Global) thanked Chairman Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT) for inviting its President and CEO, Michelle Sie Whitten, to testify at the House Subcommittee on Labor, Health and Human Services, and Education and Related Agencies FY2019 Public Witness Hearing. Whitten provided a five minute testimony on the importance of increased funding for Down syndrome research and highlighted the twenty year decline and flat funding for the condition.

Whitten testified, “For Global and the Down syndrome community, our hope is that this esteemed committee can help us to ensure that the National Institutes of Health (NIH) will take advantage of the generous $3 billion in new funding included in the FY2018 Consolidated Appropriations Act…In particular, we hope that the funding of research benefitting people with Down syndrome will increase significantly from FY2017 to FY2018 and then again from FY2018 to FY2019, and that the increase will be seen in both the current pipeline of Down syndrome research and the new trans-NIH Down syndrome research initiative.”

Last year, with support from Reps. McMorris Rodgers, Sessions, Bustos and Coffman, and under the leadership of Cole and DeLauro, 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 where Global also testified and presented compelling Down syndrome research.

As a result of that historic hearing, in March of 2018, Congress included funding for the new trans-NIH initiative to study Down syndrome in the Fiscal Year 2018 Omnibus Appropriations legislation. The provision, supported by Global, 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.

The FY2019 Public Witness Hearing on Thursday, April 26th was held at the Rayburn Building on Capitol Hill on Thursday, April 26th and featured twenty-one important advocacy groups listed below:

American Alliance of Museums, Elder Justice Coalition, Institute for Higher Education Policy, Boys & Girls Clubs of Oklahoma County, Inc., Global Down Syndrome Foundation, American Association of Nurse Practitioners, Alzheimer’s Association and Alzheimer’s Impact Movement, The Christopher & Dana Reeve Foundation, Center for Key Populations at Community Health Center, Inc., National Association of State Long-Term Care Ombudsman Programs, Michigan Works! Association, National Association of County and City Health Officials, Alliance for Biosecurity, National AHEC Organization, Coalition for Health Funding, Susan Chacon, President, Association of Maternal & Child Health Programs, American Dental Association, National Indian Health Board, American Association of Colleges of Nursing, National Council for Community and Education Partnerships, Trust for America’s Health

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 lead healthy and productive lives. To learn more, visitwww.globaldownsyndrome.org.

Arizona, Florida, Indiana, Kentucky, Missouri, Nebraska, New York, Texas among the states to receive

DENVER, CO (April 10, 2018) – In its third successful year, Global Down Syndrome Foundation (Global) awarded $16,900 to 9 organizations through their Self-Advocate Employment Initiative Grants. The Grants, a benefit of Global membership, empower local Down syndrome organizations to hire individuals with Down syndrome and help find sustainable funding from other sources in the future.

The grants continue to expand their reach in 2018 by assisting nine Down syndrome advocacy groups in employing 16 self-advocates, for a total of 48 individuals hired since the grant initiative inception in 2016. The grants will impact communities across America, with first-time winners in Plainview, NY, Bryan, TX, St. Louis, MO, Jacksonville, FL, Bloomington, IN, Tempe, AZ, Louisville, KY, and Fort Worth, TX; with one returning recipient in Omaha, NE.

“We are thrilled to announce the 2018 winners of the Global Self-Advocate Employment Initiative Grants,” said Global’s President and CEO Michelle Sie Whitten. “It was so difficult to choose 9 of 22 grant applications this year. Clearly there is a great need to employ people with Down syndrome and so many organizations that want to, but need resources. We hope we can raise funds to underwrite even more transformative grants in the future.”

The grants will help organizations hire new employees with Down syndrome or extend employment of current employees with Down syndrome initially made possible from previous grants that have expired. The variety of jobs self-advocates will be performing include but are not limited to creating employment PSA videos, assisting in classrooms, speaking at community events, and performing and supporting administrative duties.

It has been reported that those who have a co-worker with Down syndrome have higher work satisfaction levels. Global Down Syndrome Foundation hopes to spread the positive impact by supporting more people with Down syndrome in the workforce in the coming years through the annual Self-Advocate Employment Initiative grants. Eligibility to receive an Employment Initiative grant is just one of the benefits of Global membership. To learn about other member benefits and to become a member please visit the membership page.

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.

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.

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.

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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.

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.

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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 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. 

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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.