JENI STEPANEK ELECTED TO MDA NATIONAL LEADERSHIP

TUCSON, Ariz., July 9, 2004 — Jeni Stepanek of Rockville, Md., has been elected to the national leadership of the Muscular Dystrophy Association.

Stepanek was nominated as an MDA vice president by MDA President & CEO Robert Ross during MDA’s recent annual meeting in Los Angeles. She was elected to a one-year term in the voluntary leadership position by MDA’s Board of Directors.

Stepanek is the mother of the late Mattie J.T. Stepanek, best-selling poet and MDA’s National Goodwill Ambassador who died last month at 13.

She is a faculty research associate at the University of Maryland where she’s nearing completion of a doctoral degree in early childhood special education, with a specialization in anticipatory grief. She speaks and writes extensively on subjects relating to children with disabilities and their families.

Stepanek often speaks publicly on behalf of the Association and facilitated her son’s extensive involvement with MDA activities and events. She appeared alongside Mattie on several national TV shows, including “Good Morning America,” “The Oprah Winfrey Show,” “Larry King Live,” and the Jerry Lewis MDA Telethon.

Stepanek received MDA’s Personal Achievement Award for Maryland in 2001.
She is affected by an adult form of mitochondrial myopathy, and uses a power wheelchair for mobility. The infant-onset form of the disease led to the deaths of her four children.

“MDA is privileged to benefit from the leadership and dedication to its mission of Jeni Stepanek," MDA President & CEO Robert Ross said. “We’re extremely grateful for her commitment during this especially difficult time, and I know that her talents will prove essential to the success of MDA’s effort to find treatments and cures for neuromuscular diseases.”

MDA vice presidents provide counsel in their areas of expertise and assist the Association through advocacy and staunch support of its lifesaving programs and activities.

MDA is working to defeat more than 40 neuromuscular diseases through programs of worldwide research, comprehensive services, and far-reaching professional and public health education. MDA maintains 230 clinics nationwide.

The Jerry Lewis MDA Telethon will be broadcast Sept. 5-6, originating from CBS Television City in Hollywood.