MDA RESOURCES - General

Muscular Dystrophy Association
3300 E. Sunrise Drive · Tucson, AZ 85718
(800) 572-1717 · www.mda.org

Your local MDA office is the first place you should check for services related to your child's Duchenne muscular dystrophy and for other resources about DMD. On the national level, MDA produces a wide variety of informational and educational publications, videos and other materials to benefit families like yours. In addition to the resources named below, local MDA offices frequently offer speakers and workshops focused on topics related to Duchenne muscular dystrophy.

WEB SITE

The most up-to-date resource from MDA is its World Wide Web site, www.mda.org. Here you'll find most of MDA's publications online and the latest news about MDA events and research findings. Unlike many Web sites that purport to offer medical information, all the material on MDA's Web site has been verified by medical and scientific experts in neuromuscular diseases.

QUEST

Published six times a year, this national, award-winning magazine features articles and resources on many aspects of living with DMD that both the affected person and family members will find helpful. It's free to those registered with MDA. Watch future issues of Quest for stories relevant to your concerns.

Throughout this guide you'll find titles of articles from back issues of Quest that you might like to read. Most are available online and are thus hyperlinked in the list below. You can also get copies of these articles from your local MDA office or from the national office at no charge.

BOOKLETS, PAMPHLETS & VIDEOS

The following MDA publications are available at no charge.

"Breathe Easy: Respiratory Care for Children With Muscular Dystrophy" by Dr. Vikki Stefans, Dr. Robert Warren and Sheila Horan: This 16-page pamphlet contains information on respiratory care, descriptions of ventilatory equipment and guidelines for doctors. Also available in Spanish.

"Duchenne Muscular Dystrophy: Exploring Treatment Options": A summary of a workshop sponsored by MDA in June 1996, with leading researchers and clinicians.

"Facts About Muscular Dystrophy": A 24-page introduction to the nine forms of muscular dystrophy. Also in Spanish.

"Learning to Live With Neuromuscular Disease: A Message for Parents" by Sylvia E. McGriff: This MDA pamphlet contains good advice for balancing family needs and helping your child grow up. It's available from MDA offices in English and Spanish.

"Major Research Developments Supported by the Muscular Dystrophy Association": This pamphlet lists major findings in MDA's worldwide research program, arranged by year.

"MDA/AFM Duchenne Muscular Dystrophy Gene Therapy Workshop": A summary of the presentations at the third international gene therapy conference held by MDA and its French counterpart, in May 1997.

"MDA Camp: A Special Place": A brochure that informs parents, as well as potential sponsors and volunteers, about the benefits of MDA's summer camp program. Also in Spanish.

"MDA Fact Sheet": The basic information about MDA, its origins, programs and diseases covered. Also in Spanish.

"MDA Services for the Individual, Family and Community": A detailed description of all of MDA's clinical and other services. Also in Spanish.

"Partners in Service": Describes the mutual referral network between MDA and Shriners Hospitals for Crippled Children.

"Preparing for Emergencies: A Checklist for People With Mobility Problems": A 4-page safety guide cosponsored by MDA, the American Red Cross and the Federal Emergency Management Agency.

"A Teacher's Guide to Neuromuscular Disease": An informative booklet written to help school personnel understand the nature of NMD and how it might affect a child's day at school.

"Video Catalog": Descriptions of the video profiles, public service announcements and videos about MDA programs that can be used in local presentations about MDA.

"101 Hints to 'Help-With-Ease' for Patients With Neuromuscular Disease" by Dr. Irwin M. Siegel and Patricia Casey, M.S., OTR/L: This booklet by an orthopedic surgeon and an occupational therapist contains practical hints to help those with DMD in dressing, communicating, mobility, recreation, eating and other daily activities.

MDA PUBLICATIONS FOR CHILDREN

"Everybody's Different, Nobody's Perfect" by Dr. Irwin M. Siegel: Written by an MDA clinic director, this booklet shows children with disabilities and those without them that each person has many abilities.

"Hey! I'm Here, Too!" by Dr. Irwin M. Siegel: A booklet specifically for siblings of boys with Duchenne muscular dystrophy. Also in Spanish.

"Travis: I Got Lots of Neat Stuff: Children Living With Muscular Dystrophy" by Kathy L. Gordon: This booklet, written and illustrated by the mother of a child with DMD, helps kids see how well Travis has adjusted to his muscular dystrophy. Also in Spanish.

HOW TO ORDER MDA PUBLICATIONS

Check with your local MDA office for any of the publications listed above. OR, visit our online
publications order form.