The Muscular Dystrophy Association’s 2008 National Goodwill Ambassador is Abbey Umali of Redlands, Calif., a lively and articulate 8-year-old with a form of Charcot-Marie-Tooth disease.
Abbey is the first MDA national goodwill ambassador to hail from California in the program’s 55-year history. She and her family will travel the country throughout the year, representing families affected by neuromuscular diseases and served by MDA, participating in special events and meetings of national MDA sponsors and speaking with the media.
Abbey also will be featured in MDA promotional materials used nationwide and will appear on the 2008 Jerry Lewis Telethon for MDA on Labor Day weekend.
“Abbey is precocious and charismatic,” MDA National Chairman Jerry Lewis said. “I’m delighted to have such a wonderful young lady and her family spread the word about MDA’s commitment to finding treatments for neuromuscular diseases.”
Abbey is the only child of Joel and Wendi Umali. Her father is a dentist and her mother is a physical therapist.
Abbey has congenital hypomyelinating neuropathy, a form of Charcot-Marie-Tooth disease characterized by lack of coordination and balance, along with muscle weakness. She walks with the aid of leg braces.
A third-grader at Montessori School in Redlands, she loves to read, sing, swim, ride her bike, play the piano, act in plays and spend time with her friends. She also likes visiting the library, bookstores and animal parks. When she grows up, Abbey wants to be a veterinarian.
Television viewers worldwide met Abbey and her family when they were profiled and interviewed live on the 2006 and 2007 MDA Telethons.
The Umalis already take part in many local events for MDA because Abbey is serving her second term as MDA’s Goodwill Ambassador for California.
In her new role, she succeeds 14-year-old Luke Christie of Due West, S.C., who served two terms as National Goodwill Ambassador.
MDA is a voluntary health agency working to defeat more than 40 neuromuscular diseases through programs of worldwide research, comprehensive services and far-reaching professional and public health education.
Abbey receives services at Loma Linda University Medical Center, site of one of MDA’s 225 hospital-affiliated clinics nationwide.
The Association’s programs are funded almost entirely by individual private contributors.