On the cover: Alexis “Lexye” Mortimer, center, has spinal muscular atrophy (SMA). Pictured here with her parents, Joe and Melissa, and her twin siblings, Jory and Aaron, Lexye was the 2005 MDA Oklahoma Goodwill Ambassador. Dear Friends What is a Genetic Disorder? What is Genetic Testing? How are Genetic Disorders Inherited? What Happens in Actual Families? What May Happen in a Family With Duchenne MD What May Happen in a Family With Spinal Muscular Atrophy What May Happen in a Family With Myotonic MD Are There Genes Outside the Cell's Nucleus? MDA is Here to Help You

MDA is Here to Help You

The Muscular Dystrophy Association offers a vast array of services to help you and your family deal with neuromuscular disease. The staff at your local MDA office is there to assist you in many ways. The Association’s services include:

• nationwide network of clinics staffed by top neuromuscular disease specialists
• MDA summer camps for kids with neuromuscular diseases
• help with obtaining durable medical equipment through its national equipment loan program
• financial assistance with repairs to all types of durable medical equipment
• annual occupational, physical, respiratory and speech therapy consultations
• annual flu shots
• support groups for those affected, spouses, parents or other caregivers
• online support services through the e-community myMDA and through myMuscleTeam, a program that helps recruit and coordinate in-home help

MDA’s public health education program helps you stay abreast of research news, medical findings and disability information through magazines, publications, educational speakers, seminars, videos and newsletters.

MDA’s Web site at www.mda.org contains thousands of pages of valuable information, including disease specifics, research findings, clinical trials and past magazine articles.

Everyone registered with MDA automatically receives Quest, MDA’s award-winning quarterly magazine. Quest publishes detailed articles about research findings, medical and day-to-day care, helpful products and devices, social and family issues, and much more. Other MDA publications can be found at www.mda.org/publications; many booklets are available in Spanish. Ask your local office for “MDA Services for the Individual, Family and Community” and for help with obtaining copies of other publications.

If you want to learn about the genetics of your particular neuromuscular disorder, you’ll need to consult a specialist. Your MDA clnic physician can refer you to a geneticist or genetic counselor for testing and information.

If you have any questions about muscular dystrophy and neuromuscular disease, someone at MDA will help you find the answer. To reach your local MDA office, call (800) 572-1717.