MDA resources

MDA resources are available from local MDA offices or this site.

• Everyday Life with ALS. MDA book about equipment, therapies and accessibility.

• Facts About ALS. Introductory booklet about the disease. (Also available in Spanish.)

• MDA/ALS Newsmagazine. Monthly newsmagazine covering ALS research, medical, psychological, financial and caregiving issues. Free to anyone with ALS who’s registered to receive MDA services.

• Milestones in ALS Research. Booklet tracing major research developments since the 19th century. MDA has led the worldwide ALS research effort since the 1950s.

• Quest. MDA’s quarterly national magazine covering a range of issues related to neuromuscular diseases. Free to anyone with ALS who’s registered to receive MDA services; available by subscription to others.

• “With Hope and Courage: Your Guide to Living with ALS.” 2008 video to orient and inform people with new ALS diagnoses and their families.

Books

• Amyotrophic Lateral Sclerosis: A Guide for Patients and Families, 3rd edition, by Hiroshi Mitsumoto, M.D., and Theodore Munsat, M.D., Demos Health Publishing, 2009

• Amyotrophic Lateral Sclerosis, ed. by Robert H. Brown, Jr., M.D., Vincent Meininger, M.D., and Michael Swash, M.D., Blackwell Science, 2000

• Amyotrophic Lateral Sclerosis, by Robert G. Miller, M.D.; Deborah Gelinas, M.D.; and Patricia O’Connor, R.N, American Academy of Neurology Press and Demos Medical Publishing, 2005

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Websites, chat groups and listservs focused on ALS

• “Living with ALS” chats are held throughout the week; check the chat calendar.

• ALS Care
  (336) 340-6400
  ALS Care offers telephone consultations with a registered nurse, specializing in ALS home care and other related issues.

• ALS Forums
  Publications and extensive chat schedule

• ALS Therapy Development Institute forums

• Caregivers for ALS

• Living with ALS Yahoo group
  Very active forum for people with ALS and caregivers, offering detailed information and support.

• NeuroTalk Communities — ALS

• Patients Like Me

• World Federation of Neurology/ALSUntangled
  Links clinicians and researchers specializing in ALS. Individuals with a Twitter account can message @ALSuntangled with their questions about alternative or off label ALS therapy.

Caregiver-specific websites

Note: Page last updated Feb. 26, 2013.

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