Muscular Dystrophy Association Announces 2020-2021 National Ambassador Ethan LyBrand from Alabama
NEW YORK, Jan. 28, 2020 /PRNewswire/ -- The Muscular Dystrophy Association (MDA) named 10-year-old Ethan LyBrand as its 2020-2021 MDA National Ambassador.
Ethan and his parents, Jordan and Josh LyBrand, will share their stories and the organization's important mission while representing families living with muscular dystrophy, ALS and related neuromuscular diseases to raise public awareness.
Ethan, who lives with Duchenne muscular dystrophy (DMD), will share his story alongside current 2019-2020 National Ambassador Tana Zwart, a 35-year-old South Dakota resident who lives with facioscapulohumeral muscular dystrophy (FSHD).
As an MDA National Ambassador, Ethan and his family will participate in MDA events across the US, raising awareness of the need for critical funding to support innovative research and care for more than 250,000 individuals in the United States living with neuromuscular diseases. Ethan has gained independence and confidence to assume this role from his community of friends and family and from his time at MDA Summer Camp, which he will attend again this summer.
"Being an MDA National Ambassador is great because I want people to know that while all kids and adults with these diseases have a harder time doing things in general, especially traveling on airplanes, at the end of the day, we are no different than all other people, and we want to live life to its fullest," Ethan said.
Ethan, a fifth grader from Decatur, Alabama, was diagnosed with DMD in June 2011, two days before his second birthday. He went through a series of tests to see why he was not gaining weight, a challenging diagnostic odyssey which finally led to the diagnosis. He is still ambulatory but tires easily and periodically uses his power chair, which he calls "Bumblebee" for his favorite Transformer, as in Paramount Pictures film "Bumblebee." Jordan, Ethan's mother, is a high school counselor and Josh, Ethan's father, is a special education high school teacher. Ethan has a supportive younger sister, Chloe.
"We are thrilled to take on this role as a family to support Ethan as MDA's National Ambassador," said parents Jordan and Josh. "We have been part of the MDA family since the diagnosis nine years ago. Being a part of the MDA community connects us to the MDA Care Center at Children's of Alabama and MDA Summer Camp at Camp ASCCA. Getting involved in fundraising for research is part of who we are as a family."
Ethan and his parents are committed to helping MDA connect children to care by promoting early detection of neuromuscular diseases, including DMD, through newborn screening. Newborn screening allows infants with certain serious, treatable conditions to access innovative care and therapies right away by eliminating the diagnostic odyssey.
For 70 years, MDA has worked with more than 40 national ambassadors who have shared their stories to raise awareness for the urgent need to fund research for treatments and ultimately cures for neuromuscular diseases. They have traveled the nation to meet with partners, volunteers, supporters and luminaries including US presidents, and have made national television appearances.
Today, MDA Ambassadors continue to play an essential role in motivating millions to help MDA through donations, advocacy or volunteer action. Former ambassadors have grown up to achieve distinction, transitioning into adulthood while earning advanced degrees and making their marks as authors, educators, bloggers, musicians, artists and successful business professionals. Their unique voices advocate with great passion and intelligence to raise standards of accessibility in travel and in gaining treatments, for early intervention through newborn screening, for research and care for all members of the MDA family, and for the community of people living with disabilities in general.
"We are honored to welcome Ethan as our newest MDA National Ambassador and are grateful to have him and his family share their incredible story of action with the public," said Scott Wiebe, MDA Training & Community Relations Manager. "Ethan is a true advocate and has committed himself with his family to finding ways to create a movement to fund research and care for our community. We are thankful for all of our local and national MDA Ambassadors past and present, as they play an integral role in furthering MDA's mission of transforming the lives of people living with neuromuscular diseases," Scott continued.
About the Muscular Dystrophy Association
The Muscular Dystrophy Association (MDA) is committed to transforming the lives of people affected by muscular dystrophy, ALS, and related neuromuscular diseases. We do this through innovations in science and innovations in care. As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since our inception to accelerate the discovery of therapies and cures. Research we have supported is directly linked to life-changing therapies across multiple neuromuscular diseases. MDA's MOVR is the first and only data hub that aggregates clinical, genetic and patient-reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development. MDA supports the largest network of multidisciplinary clinics providing best-in-class care at more than 150 of the nation's top medical institutions. Our Resource Center serves the community with one-on-one specialized support, and we offer educational conferences, events and materials for families and health care providers. Each year thousands of children and young adults learn vital life skills and gain independence at MDA Summer Camp and through recreational programs, at no cost to families. For more information, visit mda.org.
SOURCE: Muscular Dystrophy Association