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

As the nation celebrates Down Syndrome Awareness Month, the Global Down Syndrome Foundation recognizes and thanks our friends and partners in Congress, the President and the White House, and the National Institutes of Health (NIH) for making Down syndrome a national research priority by significantly increasing research funding for FY2019 federal budget and going forward.

We are grateful to our congressional leaders who have championed Down syndrome research, which is one of the least funded genetic conditions at the NIH. The efforts of House and Senate Appropriations Labor-Health and Human Services Chairwoman Rosa DeLauro (D-CT), Ranking Member Tom Cole (R-OK), Chairman Roy Blunt (R-MO) and Ranking Member Patty Murray (D-WA) will improve the health and well-being of every person with Down syndrome as well as typical Americans living with and at risk for other diseases and genetic conditions, such as Alzheimer’s disease, cancer, and autoimmune disorders.

Further, by holding the first ever congressional hearing on Down syndrome research, that included the moving testimony of Representatives Cheri Bustos (D-IL) and Cathy McMorris Rodgers (R-WA), the American people gained a greater understanding of how harnessing the full power of the NIH and the national biomedical research enterprise will directly lead to improved treatments and eventually cures for these diseases that effect a majority of Americans. Global is honored and deeply grateful to you many other representatives including: Jaime Herrera Beutler (R-WA), Pete Stauber (R-MN), Lucille Roybal-Allard (D-CA), Barbara Lee (D-CA), Mark Pocan (D-WI), Katherine Clark (D-MA), Lois Frankel (D-FL), Andy Harris (R-MD), John Moolenaar (R-MI) and Tom Graves (R-GA) for championing Down Syndrome Research at NIH.

In his recent statement recognizing Down Syndrome Awareness Month, President Donald J. Trump spoke about the importance of “an inclusive Nation, one where Americans with Down syndrome are embraced in schools, workplaces, and communities—one where discrimination can no longer cast a shadow of inequality.” We thank the Administration for affirming its commitment to Down syndrome research and for joining us in celebrating the lives of those with Down syndrome.

Global Down Syndrome Foundation is an inclusive organization. We encourage and appreciate people from all walks of life to support children and adults with Down syndrome.

GLOBAL DOWN SYNDROME FOUNDATION RAISES OUTSTANDING $2.4 MILLION

October 23rd, 2018 by Global Down Syndrome Foundation

Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show – Celebrating a Decade of Beauty & Achievement – Attracted 1,400 Supporters & Hollywood’s Hottest Celebrities

Press Contacts:
Trisha Davistrisha@ballantinespr.com | O: (310) 454-3080
Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832

DENVER, CO Oct 23, 2018 – This past weekend, Denver was all a buzz as the Global Down Syndrome Foundation (Global) rang in its 10th Anniversary raising an outstanding $2.4 million, bringing the event’s total raised over the past decade to over $18 million. As the largest fundraiser for Down syndrome in the world, the Be Beautiful Be Yourself Fashion Show supports life-saving and transformative medical care and research. The marquee event welcomed over 1,400 guests from 23 states and 9 countries to the Sheraton Denver Downtown Hotel.

The signature fashion show featuring models with Down syndrome and their celebrity escorts included large, commemorative send-off sparklers and light-up wrist bands. The impressive celebrity lineup included: award-winning actors Jamie Foxx, Colin Farrell, Jeremy Renner, Heather Graham, Shia LaBeouf, Dakota Johnson, and John C. McGinley; supermodel Amanda Booth; Denver Bronco Cheerleaders Jozie, McKenna, and Caitlynn; Miss Colorado Ellery Jones; Soccer Player Sam Cronin; and TV personalities Kim Christiansen and Tom Green.

“What Global is doing for people with Down syndrome, including my sister DeOndra, is amazing – the science, the medical care and the important awareness,” said Foxx, who has been a dedicated supporter of Global from the start. “And you know, this is just the beginning – what we’re going to accomplish in the next ten years will be so important as our loved ones with Down syndrome age.”

The Denver Broncos showed up with major support from Super Bowl MVP Von Miller, quarterback Case Keenum, placekicker Brandon McManus, running back Phillip Lindsay, safety Justin Simmons, and tight end Jeff Heuerman. This year, Global had 27 self-advocate models, including the 2018 Ambassador Sam Levin, as well as the return of past Ambassadors: Chase Turner Perry, Sophia Kay Whitten, Katherine Vollbracht Winfield, Clarissa Capuano, Louis Rotella IV, and Marcus Sikora.

Actors Colin Farrell and Zack Gottsagen received Global’s prestigious Quincy Jones Exceptional Advocacy Award (Q Award) to standing ovations. In his acceptance speech Gottsagen said, “People with disabilities need to work together with our friends for inclusion and equal opportunities. So don’t forget to vote! I have voted in every election since I was 18 years old.” He then decided to start the catwalk early and while receiving his Q Award he was surprised by friends Shia LaBeouf and Dakota Johnson who danced down the runway with him.

An impromptu live auction saw Jamie Foxx, Jeremy Renner, Colin Farrell, Von Miller and John C. McGinley jump on stage and auction off items from Von Miller’s jacket to Jeremy Renner’s exclusive Marvel premier tickets and Colin Farrell’s exclusive Dumbo premier extravaganza.

Kacey Bingham and Brittany Bowlen served as the 2018 Be Beautiful Be Yourself Fashion Show chairs, carrying on the legacy of their mothers Kay Burke and Annabel Bowlen, who have been involved with Global since its inception. In support of the 10th Anniversary, past event chairs showed up in spades including Peter Kudla, Anna and John J. Sie, Sharon Magness Blake and Ernie Blake, Ricki Rest, and Nancy Sevo.

Entering its 10th year, Global is thriving. The millions raised at the Be Beautiful Be Yourself Fashion Show every year help fund Global’s world-class and unprecedented Down syndrome research and medical care which is helping to increase lifespan and quality of life of people with the condition.

“On our 10th Anniversary, we are so grateful to our dedicated medical professionals at the Sie Center for Down Syndrome at Children’s Hospital Colorado, our brilliant scientists at the Crnic Institute for Down Syndrome on the Anschutz Medical Campus, our Down syndrome partner organizations, generous sponsors, influential celebrities, amazing self-advocates and families, and our hardworking team!” said Global President and CEO Michelle Sie Whitten.

Global’s recent lobbying efforts to Congress and outreach to the National Institutes of Health (NIH) resulted in the first significant increase of NIH Down syndrome research funding in nearly 20 years, resulting from $35 million in 2017, to $58 million in 2018, to 98 million in 2019. Additionally, Global just opened its new Cherry Creek headquarters, which includes top-notch office facilities and a future education center of excellence supported by a generous grant from The Salah Foundation. The building will be a home for people with Down syndrome and their families, as well as a destination for inclusion, inspiration, and achievement for everyone.
“Together, we are transforming and saving lives.”

Missed the event? It’s not too late to get involved! See photos from the event and read all the top media coverage.

To learn more about the Be Beautiful Be Yourself Fashion Show or to donate, visit bebeautifulbeyourself.org

To learn more about the Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

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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. Global supports the research of hundreds of scientists around the world through their advocates, partners and affiliates, including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome. Global invites its supporters to celebrate a decade of milestones in helping people with Down syndrome at their 10th Anniversary Be Beautiful Be Yourself Fashion Show. To learn more, please visit www.globaldownsyndrome.org and www.bebeautifulbeyourself.org.

As the nation celebrates Down Syndrome Awareness Month, the Global Down Syndrome Foundation recognizes and thanks our friends and partners in Congress, the President and the White House, and the National Institutes of Health (NIH) for making Down syndrome a national research priority by significantly increasing research funding for FY2018 federal budget and going forward.

We are grateful to our congressional leaders who have championed Down syndrome research, which is one of the least funded genetic conditions at the NIH. The efforts of House Appropriations Labor-Health and Human Services Chairman Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT) will improve the health and well-being of every person with Down syndrome as well as typical Americans living with and at risk for other diseases and genetic conditions, such as Alzheimer’s disease, cancer, and autoimmune disorders. Further, by holding the first ever congressional hearing on Down syndrome research, that included the moving testimony of Representatives Cheri Bustos (D-IL), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX), the American people gained a greater understanding of how harnessing the full power of the NIH and the national biomedical research enterprise will directly lead to improved treatments and eventually cures for these diseases that effect a majority of Americans.

In his recent statement recognizing Down Syndrome Awareness Month, President Donald J. Trump spoke about the importance of “deepening our understanding of Down syndrome and learning more about how we can ensure the beautiful people with Down syndrome are able to fully participate in society.” We thank the Administration for affirming its commitment to Down syndrome research and for joining us in celebrating the lives of those with Down syndrome.

Global Down Syndrome Foundation is an inclusive organization. We encourage and appreciate people from all walks of life to support children and adults with Down syndrome.

Celebrities vow to raise awareness and funds for life-changing medical care & research at Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show – Celebrating a decade of beauty and achievement

Press Contacts:
Trisha Davistrisha@ballantinespr.com | O: (310) 454-3080
Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832

DENVER, CO. – Tuesday, Oct. 9, 2018 – Today the Global Down Syndrome Foundation (Global) announced academy-award nominee and Marvel’s “Hawkeye” Jeremy Renner, Super Bowl 50 MVP Von Miller, award-winning actor and Global board member John C. McGinley and supermodel and actress Amanda Booth will join its celebrity lineup for this year’s 10th Anniversary of the Be Beautiful Be Yourself Fashion Show. The 10th Anniversary will underscore and celebrate a decade of beauty and achievement. The marquee event is the largest Down syndrome fundraiser in the world and will be held during Down Syndrome Awareness Month on Saturday, Oct. 20, 2018 at the Sheraton Denver Downtown Hotel, 1550 Court Place in Denver.

Renner, Miller, McGinley and Booth will join Global’s 2018 Quincy Jones Exceptional Advocacy Award (Q Award) winners and film stars, Colin Farrell and Zack Gottsagen. Both actors are passionate advocates for the differently-abled, and Zack himself has Down syndrome.

Other confirmed celebrities for the 10th Anniversary Be Beautiful Be Yourself Fashion Show include: Miss Colorado Ellery Jones; Major League Soccer player Sam Cronin; Denver Broncos players Justin Simmons, Bradley ChubbRon Leary, and Brandon McManus; and past Q Award winner DeOndra Dixon.

During the fashion show, Global will also honor the 2018 Be Beautiful Be Yourself Ambassador Sam Levin while celebrating the return of past Ambassadors: Chase Turner Perry, Sophia Kay Whitten, Katherine Vollbracht Winfield, Clarissa Capuano, Louis Rotella IV and Marcus Sikora.

Entering its 10th year, Global is thriving. Since the establishment of the Be Beautiful Be Yourself Fashion Show, the event has raised over $16 million which underwrites life-changing research and life-saving medical care. Global’s recent lobbying efforts to Congress and outreach to the National Institutes of Health (NIH) resulted in the first significant increase of NIH Down syndrome research funding in nearly 20 years, from $35 million in 2017 to $58 million in 2018. Additionally, Global just opened its new Cherry Creek headquarters, which includes top-notch office facilities and a future education center of excellence supported by a generous grant from The Salah Foundation. The building will be a home for people with Down syndrome and their families, as well as a destination for inclusion, inspiration and achievement for everyone.

“We work very hard,” said Global Down Syndrome Foundation President, CEO and Co-Founder, Michelle Sie Whitten. “Global provides excellent medical care to over 1,500 patients from 28 states and 10 countries, has made groundbreaking research discoveries that will improve health outcomes and has successfully lobbied Congress to get our fair share of funding. On our 10th Anniversary, we are filled with gratitude for the outstanding medical professionals, scientists, Congressional champions, Down syndrome partner organizations, celebrities and wonderful self-advocates and families who empower us to save and transform lives every day.”

Various levels of 10th Anniversary Be Beautiful Be Yourself Fashion Show 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, additional information, imagery or to cover the Be Beautiful Be Yourself Fashion Show, 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. Global supports the research of hundreds of scientists around the world through their advocates, partners and affiliates, including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome. Global invites its supporters to celebrate a decade of milestones in helping people with Down syndrome at their 10th Anniversary Be Beautiful Be Yourself Fashion Show. To learn more, please visit www.globaldownsyndrome.org and www.bebeautifulbeyourself.org.

Global President & CEO Michelle Sie Whitten Takes a Stand

September 13th, 2018 by Global Down Syndrome Foundation

REALLY? Insulting people who are victims of sexual abuse and people who were incensed by crass racist comments wasn’t enough? ANOTHER NETFLIX comedian has to take a swing at people with Down syndrome?

And while the Tonight Show starring Jimmy Fallon did the right thing and CANCELLED Norm Macdonald’s scheduled appearance on it show, NETFLIX is once again supporting the “R” word, disparaging comments about people with Down syndrome, and even social media promoting violence against advocates for people who are differently-abled.

The WILL of the people defending against sexual and abuse and racism was heard. I am counting on those same people to come together for those who are differently-abled and make sure this population also has a STRONG a VOICE. PLEASE. Let us come together and send Netflix a message to CANCEL THIS SHOW! And if they don’t cancel the show, consider cancelling your NETFLIX subscription. For a day, a month, anything that shows power in numbers WHO CARE.

For Norm, glad you apologized. But REALLY? You needed a word for “stupid” and you came up with “Down syndrome”? I call on you to spend a day with a person with Down syndrome and then see if you can’t come up with a better word.

To be clear, at the Global Down Syndrome Foundation, we are grateful for the freedoms we have in the US – including freedom of speech. AND YET, we also believe there are words that we are free to use, but as a society choose not to use because they are so directly tied to discrimination against a vulnerable population. What we are asking for is not too much or too difficult. There are lots of depraved topics that are funny (disclosure – I’m half NJ Italian) that don’t lend themselves to discrimination or oppression. So, you can still get that cheap laugh and feel good about yourself.

It’s time to call NETFLIX out. Seriously, AGAIN, we have nothing to lose.

Michelle Sie Whitten, President and CEO, Global Down Syndrome Foundation

GLOBAL DOWN SYNDROME FOUNDATION AWARDS OVER $550K IN EDUCATIONAL GRANTS

July 12th, 2018 by Global Down Syndrome Foundation

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

(L-R) Rep. Tom Cole (R-OK), Ambassador Frank Stephens, The Voice winner Cassadee Pope, Rep. Rosa DeLauro (D-CT), Global President and CEO Michelle Sie Whitten, executive director of the Linda Crnic Institute for Down Syndrome Dr. Joaquín Espinosa

 

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.


“I want to thank you again for your testimony and for your advocacy, which has been extraordinary and has really made an enormous difference in the lives of literally thousands and thousands of individuals and families.”
 
“There really aren’t many reasons why we shouldn’t see more focus on Down syndrome than we have in recent years so it’s our hope and expectation that that will happen.”

 
    – Chairman Tom Cole (R-OK)


“You could have easily taken care of your own child, … but what you’ve chosen to do is really extraordinary: to take this experience and to be responsible for thousands and thousands and thousands of youngsters who are out there. That really is in another element.”
 
“The key is the research and what you’re doing is exactly the right thing … Your advocacy and that of families and others out there will make a difference.”

 
    – Ranking Member Rosa DeLauro (D-CT)

PRESS RELEASE

FOR IMMEDIATE RELEASE
Ed Mullen | 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

Education Grants 2018

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.