Our Collaborator — MDA
10-year Anniversary Updates
MDA created two social media flyers as a
tribute to Mattie, who served as a
3-term MDA National Goodwill Ambassador.
The Muscular Dystrophy Association (MDA) is a voluntary health agency working to defeat neuromuscular diseases through programs of worldwide research, comprehensive services, and far-reaching professional and public health education. The Association’s programs are funded almost entirely by individual private contributors.
Mattie, his three siblings, and his mom all were diagnosed with Dysautonomic Mitochondrial Myopathy – a rare mutation of one of the 43 neuromuscular diseases for which MDA provides research and support. In 1995, when Mattie was 5, he began serving as a local ambassador for the organization, attending events and fundraisers and sharing his thoughts on how MDA provides happiness and hope for families affected by these often-devastating conditions. In 2001 and 2002 he served as the Maryland State Goodwill Ambassador, and from 2002 to 2004, he traveled the country serving as the National Goodwill Ambassador.
In 2003, Mattie worked with his local MDA offices in Washington, DC, Maryland, and Northern Virginia to create the “Heartsongs Gala.” Mattie’s vision was for an annual ‘Black Tie Party’ during which families, staff, donors, and supporters of MDA would gather together to celebrate hope. That effort continues today, and across the years, this fundraiser has raised millions of dollars that support camp, clinic, and research programs for local families. During his life, Mattie was the keynote speaker for this event. Now, Mattie’s mom, Jeni, proudly fills that role.
Following Mattie’s death in 2004, MDA established the MDA Mattie Fund to honor Mattie’s life and legacy, and his advocacy work for the organization. The fund is used for medical research to help find treatments and cures for childhood neuromuscular diseases.
According to Jerry Lewis, MDA National Chairman, “Mattie was something special, something very special. His example made people want to reach for the best within themselves. It was easy to forget how sick he was because his megawatt personality just made you want to smile. With Mattie, there was always a silver lining. Life threw its worst at him and he responded by seeing the good. He was — he is — a shining star.”
Mike Blishak, MDA Vice President Community Programs, added, “Mattie was an extraordinary young man whose life and spirit had a powerful impact on all of us at MDA as well as everyone who came to know him through his writings or television appearances. Mattie’s legacy is a rich one, preserved in the amazing words he left us – and in the wonderful memories we carry of him.”
MDA has been an incredible collaborator and source of support to the Mattie J.T. Stepanek Foundation since its establishment in 2005. The organization encouraged MDA staff nationwide to participate in our gift brick and other sponsorship programs, and they were a key part of the 2008 Dedication Ceremony for the Mattie J.T. Stepanek Park in Rockville, MD. In addition, MDA provided the Foundation with thousands of Mattie’s book, which have been used as a part our outreach efforts with schools and other organizations.
To read MDA’s press release issued after Mattie’s death please click here.
To view MDA’s Mattie Tribute and Billy Gilman’s performance
from the 2010 MDA Telethon, visit our Video Gallery.
To learn more about the neuromuscular disease that affected Mattie,
his siblings, and his mom, please visit http://mda.org/disease/mito.html.
To learn more about MDA, or Mattie’s role with this organization,
please visit www.mda.org.