DMD/MD Organizations    DMD/MD Personal Websites    Disability Organizations    Mailing Lists, Chat & Support    Care & Treatment    Research & Hope    Equipment & Suppliers    School & Law    Poems & Stories    Misc/Other

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Care & Treatment
	A Letter of Encouragement from a DMD Mom Dear Friends: When my husband, Terry, and I were told eight years ago that our eldest child, Michael, has Duchenne muscular dystrophy, we were devastated. At first, we felt quite helpless. But knowing that helplessness wouldn't help our son, we became involved with the Muscular Dystrophy Association and with other parents. Since then we've learned a great deal, much of it very hopeful. We've also found inner peace with the challenges facing us, and enjoyed a full, rewarding family life...
Back To Top  Disability Organizations
	Canine Assistance - Georgia Canine Assistants is a non-profit organization, founded in 1991, which trains and provides service dogs for children and adults with physical disabilities or other special needs. In addition to physically assisting those with disabilities, Canine Assistants service dogs are instrumental in removing many of the barriers faced by the disabled in today's society. One recipient made the value of this skill quite clear when asked by a reporter what she liked most about her service dog...
Back To Top  DMD/MD Organizations
	Association Canadienne de la Dystrophie Musculaire (French MDA Canada.) Nouveautés sur la collecte de fonds, Les régions de l'ACDM, Numéro d’automne de Connexions, Renseignement destiné à nos clients, Q.P.F. Vous pouvez consulter en direct nos fiches de renseignements et nos brochures traitant de maladies précises. Le dernier numéro de Connexions, bulletin d'information saisonnier de l'Association Canadienne de la Dystrophie Musculaire, vient tout juste d'être mis à la poste.
	European Alliance of Neuromuscular Disorders Associations Newsletter, Youth organisation, Information and fact sheets, Holiday destinations.
	Hope 4 MD Hope For Muscular Dystrophy is a place for Family and Friends to join for emotional and educational support and to share in daily discussions and insites to enrich the lifestyle of the Muscular Dystrophy Patient.
	Muscular Dystrophy Association of Canada Fundraising, MDAC Regional Sections, FAQs, Firefighter Boot Drive, Information for Clients, "Fall Issue of Connections". All of our MDAC fact sheets and disorder specific brochures are available on-line. The newest issue of Connections, the Muscular Dystrophy Association of Canada's seasonal newsletter, has just been posted.
	Muscular Dystrophy Association USA Here at MDA's home, you'll find a searchable database of our 230 MDA clinics and numerous publications, including versions of MDA's Quest Magazine and The ALS Newsletter. Also, there's a way to Ask the Experts at MDA about current research developments and medical management of neuromuscular conditions. See the latest additions to the site on our What's New page.
	Muscular Dystrophy Australia [From Boris Struk] When my son Ryan Struk, was diagnosed with DMD in 1983, there was little information available about this "unknown" disorder. The following years saw great development in the scientific understanding of DMD and other Neuromuscular Disordsers (NMD) as well as huge improvements in the area of Information Technology. The information currently available on MD and related NMDs is nothing short of fantastic when compared to 10 years ago. In fact, this site has grown significantl
	Muscular Dystrophy Campaign - UK The information library contains six sections and includes 42 downloadable fact sheets. Key facts: 24 fact sheets about neuromuscular conditions, a list of people who might be able to help you and other useful info. Research: subjects such as projects currently funded by the MDC, info about genetics and diagnosis. Care: physiotherapy and ventilation. Appliances: choosing a wheelchair or adapting your home. Education: integration or special schooling. Living: living with a disability.
	Muscular Dystrophy Ireland Muscular Dystrophy Ireland provides support to persons with neuromuscular conditions and their families through the provision of a range of support services.
	Parent Project Muscular Dystrophy PPMD is an advocacy and fund raising organization emphasizing researching a cure for Duchenne and Becker muscular dystrophies. PPMD was a major force behind the Duchenne Muscular Dystrophy Care Assistance Research & Education Act (DMD CARE Act, HR-717) and Muscular Dystrophy Care Assistance Research & Education Act (MD CARE Act, S-805) legislation.
	United Parents for Duchenne Muscular Dystrophy Research This is a jumping point into DMD parent organizations around the world.
Back To Top  DMD/MD Personal Websites
	Bill's Homepage of Muscular Dystrophy, Sci-Fi & Trains General and personal information about Duchenne Muscular Dystrophy and other subjects. Includes "Kenny's Page". Kenny is a teenage boy with DMD. (I get a "plugin error" message, but the page loads okay. The site was last updated in 1999.)
	Jeff's Home Page Home Page of Jeff McAllister, a 24 year old with Duchenne Muscular Dystrophy. All about my friends, family, interests, my life, and my disability. Expanding links page includes disability info and accessibility information for Washington D.C.. Informative and funny.
	Northern Snowbunny - Mom's page for her two boys with DMD A site dedicated to Steven and Bradley, Cherie's two boys with Duchenne Muscular Dystrophy. The site includes cute photos, several poems and a lot of background music and graphics.
	Our Muscular Dystrophy Site in SW Va My husband and I put this site together to raise awareness of muscular dystrophy. There is an article about myotubular myopathy. a rare type of md, which I have. If you have any documented information or would like to share your story of living with md, or being a caretaker. Please email us: rljsch@webtv.net or redscootee@webtv.net Also lists fund raisers in SW VA.
	Win Phatak's Disability with Dignity Website Win Phatak is a man from India who has had MD for 17 years. "The fact that you are reading this page, means you have come here in search of solutions. Solutions to various problems which one faces in their life. This is particularly true if some search engine has hurtled you to this page offering solution to problems of living with a disability. And you will not be disappointed with your visit."
Back To Top  Mailing Lists, Chat & Support
	DMD Forum Rae, a mom with 2 boys in Australia, runs this very helpful website. She also moderates the DMD Support Mailing List & hosts a twice-weekly online chat (Tuesdays & Fridays).
	DMD Support Mailing List Moderated by Rae of the DMD Forum, the objective of this mailing list is to help support DMD parents, DMD boys & men, and friends. Averages about 6-10 messages per day.
	MD-List · Support and discussion of Muscular Dystrophy Support and discussion of Muscular Dystrophy. This is the "new improved" version of MD-List@Basix.COM, which stopped functioning April 2000. Yahoo provides improved functionality (including web access to all messages). Note that there were about 300 members of the "old" MD-List when it went down in April. I've invited all previous members to rejoin the Yahoo version. (Averages 5-10 messages per day.)
	Yahoo Groups Related To Muscular Dystrophy This is a query result listing all Yahoo groups related to Muscular Dystrophy.
Back To Top  Misc/Other
	Duchenne Defined - From MDA USA Quick Definition... Onset: Early childhood - about 2 to 6 years. Symptoms: Generalized weakness and muscle wasting affecting limb and trunk muscles first. Calves often enlarged. Progression: Disease progresses slowly but will affect all voluntary muscles. Survival rare beyond late twenties. Inheritance: X-linked recessive (females are carriers).
	Duchenne Defined - From MDC-UK What is Duchenne muscular dystrophy? It is one of more than 20 types of muscular dystrophy. All the muscular dystrophies are caused by faults in genes (the units of inheritance that parents pass on to their children) and they cause progressive muscle weakness because muscle cells break down and are gradually lost. The Duchenne type affects only boys (with extremely rare exceptions) and a problem in this gene is...
	Duchenne Defined - From Parent Project MD Duchenne is the most common lethal genetic disorder, affecting all populations worldwide. It is the most common and most devastating of the muscular dystrophies. Duchenne is an x-linked inherited disorder characterized by a rapidly progressive muscle weakness. Duchenne affects only males, with rare exceptions. Children with Duchenne exhibit symptoms of weakness, delay in walking, waddling gait, difficult in climbing stairs, and gowers maneuver often in combination with muscle hypertrophy...
Back To Top  Research & Hope
	Center Watch - Clinical Trials Listing Service You can use this site to find a wealth of information related to clinical trials, such as a listing of more than 41,000 industry- and government-sponsored clinical trials as well as new drug therapies recently approved by the FDA. Our site is designed to be a resource both for patients interested in participating in clinical trials and for research professionals. (Enter "DMD or Duchenne" in the unlabeled search box at the top. OR hit 'Advanced Search' to check on specific drugs, etc.)
	Jesse's Journey - A Father's Tribute Jesse is a teenager in Canada who has DMD. His father as taken a head-on approach to fundraising. His goal? To raise $1,000,000 each year "forever". In the five years since the Foundation was established, and Jesse's Journey was launched, Canadians have translated their interest and understanding into a fund raising program that has raised more than $4 million!
Back To Top  School & Law
	Familias y Abogados Asociados por Educación En Español. Linea Informativa de la Sociedad de Familias y abogados de la Educación.
	Family & Advocates Partnership for Education Information and success stories related to education and IDEA (Individuals with Disabilities Education Act).
	LAW: House Resolution HR-717 (The DMD CARE Act) The latestest official information on The Duchenne Muscular Dystrophy Childhood Assistance, Research and Education Amendments of 2001 (The DMD CARE Act). This Act will organize and fund research and education regarding Duchenne muscular dystophy diseases.
	LAW: Senate Resolution S-805 (The MD CARE Act) The latestest official information on The Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001 (The MD CARE Act). This Act will organize and fund research and education regarding muscular dystophy diseases.
	Special Needs Trusts One CRITICAL item to prepare is a "Special Needs Trust" for your disabled child. In the even of your passing, should your child "inherit" your estate, he could become ineligible for government services and support until that inheritance is "spent down". Through a "Special Needs Trust", your estate can "suppliment" government services and support, rather than causing your child to be ineligible.
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