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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.

Global Testifies Before Congress, Our Dynamic Be Beautiful Be Yourself Fashion Show Chairs, And More Exciting News!

Family and fortitude helped Mary Miller overcome leukemia, and her inspiring fight could help change the future for thousands of more kids with Down syndrome facing the diagnosis.

Mary Miller, 13, of Finksburg, Maryland, is like a lot of girls her age. She loves school, swimming, making YouTube videos with her sisters, Lara and Sarah, and musical theater.

“My favorite thing about theater is the songs,” Mary said. “I like singing with my sisters.”

But at age 11, Mary’s full, vibrant life was interrupted by a leukemia diagnosis.

THE DIAGNOSIS: MUCH HIGHER IN CHILDREN WITH DOWN SYNDROME
Children with Down syndrome are 20 times more likely than typical children to develop acute lymphoblastic leukemia (ALL), also called acute lymphocytic leukemia. ALL is the most common childhood cancer and occurs when the bone marrow makes too many immature lymphocytes, a type of white blood cell, and spreads to the bloodstream. According to the nonprofit Cure Research For Childhood Cancer, ALL accounts for 25 percent of all cancers in children under age 15, and more than 3,000 new cases of ALL are diagnosed in children and adolescents in the U.S. each year.

Signs of childhood ALL include fatigue, anemia, weight loss, loss of appetite, fever, bone pain, swelling of the joints, enlarged lymph nodes, bleeding from the gums, and frequent infections. The type of doctor who treats blood cancers is called a hematologist-oncologist.

If a doctor suspects ALL or any leukemia in a child, most likely there will be blood tests, taking fluid from the bone marrow (bone marrow aspiration), and taking a small bit of bone and marrow (bone marrow biopsy). Treatment for ALL may include chemotherapy, immunotherapy, or targeted drugs that kill cancer cells.

FROM DESPAIR TO HOPE
Generally, the illness strikes children before age 5, so Mary’s diagnosis at 11 came as a shock to her parents, Jake and Jane, despite the higher risk she faced.

“Even as a nurse educator for Down syndrome, I was sucker punched,” said Jane, who coincidentally is an oncology nurse.

She learned of a Facebook group called Down Syndrome and Leukemia through another mother of a child also with Down syndrome and leukemia. Connecting with other parents whose children were going through what Mary was going through was a lifesaver, Jane said.

Through the Facebook group, Jane and Jake learned that many children with Down syndrome do not get a diagnosis as soon as they could. She learned many helpful care pointers, such as how to help with Mary’s head rash from her pillow by using a special port dress instead of a typical adhesive dressing, which can cause irritation, especially for people with Down syndrome, who tend to have more sensitive skin. She also found hope in a close friend, Cathy Fonfara-LaRose, whom she’d met through the Down Syndrome Connection in Maryland. Cathy’s daughter, Charlotte, and Mary had become friends at the Global Down Syndrome Foundation’s 2014 Be Beautiful Be Yourself Fashion Show in Washington, D.C.

This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

Wanting to help Mary, as well as all the other kids with Down syndrome at risk for leukemia, Fonfara – LaRose worked with Global to establish the Mary Miller & Charlotte Fonfara-LaRose Down Syndrome & Leukemia Research Fund. The fund is underwriting a grant for Joaquín Espinosa, Ph.D., and his team at the Linda Crnic Institute for Down Syndrome, testing the effectiveness of drugs that inhibit two genetic mutations (MDM2 and CDK8) that cause uncontrolled cellular growth and proliferation linked to leukemia.

“This grant could really be the catalyst for some great research development with Down syndrome and leukemia,” Jane said.

A BRIGHT FUTURE
After two and a half years of grueling cancer therapies, including more than 200 nights in the hospital, Mary finished treatment in November 2017. She’s looking forward to a future that includes going to college and opening a restaurant with her father.

“Beating leukemia is the best,” Mary said. “I’m glad I don’t have procedures and that I don’t have to stay in the hospital.”

Throughout her entire journey, Mary’s parents marveled at her fortitude and determination.

“She doesn’t give up. She is optimistic in a w ay that is beyond my understanding, considering what she’s been through,” Jane said. “She’s a fighter.”

BRAVE, FUN, AND BEAUTIFUL
Thirteen-year-old Mary Miller was born to perform. One of the YouTube videos her sisters helped her create has nearly 50,000 views, and she didn’t let a cancer diagnosis get in the way of making more.

“I like making [YouTube videos] because they make people happy,” Mary said.

Now finished with cancer treatments, Mary wants other people with Down syndrome to learn what it takes to perform with grace: “They can learn to be brave and fun and that they are beautiful,” she said.

Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.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.

We are pleased to announce, that after three years of hard work, Global and Denver Health have joined forces to organize a pilot clinic which aims to provide excellent medical care to adults with Down syndrome.

The clinic has recruited two Down syndrome experts– Dr. Barry Martin, MD and Bryn Gelaro, LSW– to address medical and behavioral health on Wednesdays at the Denver Health Federico F. Peña Southwest Family Health Center and Urgent Care. We are excited to share that this pilot clinic will open on June 27th.

During the pilot period, which will end in December, we have the opportunity to prove the need for an excellent quality medical care center specifically for adults with Down syndrome. If we are able to easily fill appointments between Jun and December there is a high likelihood we could establish a “permanent” Down syndrome clinic for adults. So make your appointment today and help us ensure a healthier future for our adults!

Thanks to our amazing families and to Denver Health for this opportunity to further fulfill our mission! And a special thanks to Dr. Dennis McGuire, LCSW for his invaluable guidance and advice.

 
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