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The Muscular Dystrophy Family Foundation, Inc. (organizational spotlight).

When Frances and Dennis Clouser's son, Luke, was 5 years old, he began having difficulty standing and walking. Eventually, he was diagnosed with Duchenne muscular dystrophy (DMD), a progressive neuromuscular disease affecting primarily males and which limits the lifespan to the teens or early 20s. The Clousers contacted the Muscular Dystrophy Foundation for assistance. Now more than 15 years later, Luke and his family are still clients of the Foundation and strong supporters of the national nonprofit agency.

The Clousers are just one of the multitude of families nationwide served by the Foundation since it was established in 1958. The Foundation's original mission was to provide support services to families in Indiana affected by DMD. In 1997, the Foundation changed its name to the "Muscular Dystrophy Family Foundation[R]" (MDFF). By adding the word "Family" to its name, the Foundation sought better to reflect its broader mission--to serve the entire family unit. The Foundation understands that a neuromuscular disease doesn't just affect the person with the disease; every member of the family is affected in some way and therefore every member is eligible to receive services.

MDFF assists families from the day of diagnosis until their services are no longer required. The Foundation provides items other agencies do not and many items not covered by insurance, including manual and power wheelchairs, hospital beds, van lifts, breathing machines, ramps, shower chairs and computers. MDFF also offers camping scholarships, clinic services, home visits and school and work advocacy as well as assistance with funeral expenses.

In 1997 the Foundation established a toll free number for families to use. As the Foundation soon discovered, limitations imposed by private insurers, Medicare, Medicaid and reduced funding from other sources necessitated the expansion of the Foundation's services to a national level. From 1997 to 2001 the number of requests the Foundation received increased 400 percent.

MDFF increased its staff to handle the increase and began to focus on providing adaptive equipment. Today, MDFF serves families in 49 states and provides services to 43 different neuromuscular diseasesMonthly clinics held at the MDFF office in Indianapolis, Indiana, are open to any child or adult with a neuromuscular disease. As MDFF Vice President Denise Hancock states, "We call our clinic services `One Stop Shopping' since all the proper disciplines are in place to provide the personalized care our families require." At these clinics, services are available from a wide range of professionals, including a nurse, occupational therapist, physical therapist, genetic counselor and pulmonary specialist. Also on hand to help out are the MDFF medical director and director of social services.

Thanks to a recent grant of $40,000 by the Efroymson Fund, a fund of the Central Indiana Community Foundation, the MDFF has been able to add an assistive technology specialist to their cadre of professionals. The specialist facilitates a monthly equipment clinic; orders, maintains and repairs equipment for families; writes letters of medical necessity; and assists clients with insurance claims and Medicaid waivers. The grant will also aid the agency in responding and serving client equipment needs much faster than in the past.

"Families can reach a staff member seven days a week, twenty-four hours a day. Since equipment breaks down after hours and families need emotional support holidays and weekends, we try to be available to our families at all times," Hancock adds.

MDFF has no plans to open offices in other states. The Foundation wants to use its funds to provide services, not for salaries and overhead. MDFF has found that it is more economical for them to fly a staff member to assist a family in another state than to open another office. The Foundation does not charge any fees to families requesting assistance; however, all available family resources must be utilized before MDFF can provide assistance.

MDFF conducts no research and is not affiliated in any way with the MDA or the Jerry Lewis Labor Day telethon. While the MDFF believes that research is extremely important, the organization believes that having the proper equipment and support in order to live an independent and productive life is equally important. The agency's slogan" No Boundaries[R]" is supported by its mission to offer equipment and support to eliminate boundaries for anyone with a disability.

The Muscular Dystrophy Family Foundation" also focuses on an individual's ability rather than his disability. When Luke Clouser graduated from high school and wanted to attend college, he encountered resistance from many funding sources. These organizations wondered if Luke would be able to keep up with his classes since he required a ventilator to breathe and the full services of a full-time aid. Through the advocacy efforts of MDFF, Luke is now within two classes of obtaining his degree. "We truly don't know how we would have managed if it hadn't been for the Muscular Dystrophy Family Foundation[R]", says Dennis Clouser. "Whether we need a van lift or a shoulder to lean on--they're always there to help us."

For more information, contact: Muscular Dystrophy Family Foundation[R] 2330 N. Meridian St. Indianapolis, IN 46208-5730 Phone: (800) 544-1213 or (317) 923-6333 E-mail: mdff@mdff.org; Web site: http://www.mdff.org

Annual Fall Fishing Bash (Bass)

Benefiting the Muscular Dystrophy Family Foundation" September 14-15, 2002 Dale Hollow ReservoirHorse Creek Marina--1150 Horse Creek Road, Celina, TN 38551 Cabins and camping available; $150 per team For more information:(317) 788-9167; (800) 545-2595

Judith R. Duncan is the President/CEO of MDFE. She is a strong advocate for individuals with disabilities. As a bereavement facilitator, she also conducts workshops nationwide.
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Article Details
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Author:Duncan, Judith R.
Publication:The Exceptional Parent
Article Type:Brief Article
Geographic Code:1U3IN
Date:Jun 1, 2002
Words:925
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