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Other Resources


ALS Resources:
These resources are intended to direct patients and supporters to overall informational resource and support services.
  • International ALS Links: International Alliance of ALS/MND Associations offers chat rooms, links, the international symposium web page and latest news.

  • ALS Association (ALSA): The ALS Association is a national not-for-profit health agency providing patient and community services, public education, patient advocacy and research. The Association’s affiliate network includes chapters in communities throughout the nation.

  • ALS Hope: Founded in January of 2002, ALS Hope aims to help find a cure for ALS by funding progressive research while creating a new methodology for funding, researching, and developing treatments for all other orphan diseases. Site offers contact information for volunteering locally in the St. Louis area and opportunities for online donations.


  • ALS Links.com: Offers links to chat rooms, books, pharmaceuticals, clinics, Daily Living Aids, Alternative Medicine and more.

  • Les Turner Amyotrophic Lateral Sclerosis Foundation, Ltd: Offers patient and family services, an events calendar and research. The website is affiliated with Northwestern University Medical School.

  • March of Faces: Promotes ALS awareness and advocacy and is operated by ALS patients and caregivers.

  • Ride for Life: Offers news, research, PALS profiles and a bulletin board.

  • Project A.L.S.: Started by Hollywood producer Jenifer Estess, this ALS nonprofit hosts several high-profile fundraisers per year to benefit ALS research. Information on the fundraisers and research it supports.

  • Hope for A.L.S.: Supports the ALS Treatment Initiative, a collaboration between top ALS doctors and researchers around the U.S. The site includes information on ALSTI, biographies of patients, fundraising event information and more.

  • University of Miami ALS Clinic and Research Center: Offers support groups for patients and caregivers, drugs, latest news, doctors, research and ALS centers.

  • ALS Survival Guide: Provides research abstracts, caregiver information, the biology of ALS, ALS news, discussion, a bulletin board and ask the expert.

  • ALS Society of Canada:Offers up-to-date information about ALS, and serves patients and caregivers..

  • Muscular Dystrophy Assocation: Has an ALS Newsletter.

  • ALS: A Guide for Patients

  • ALS Society of Ontario: Helps people living with ALS and their families manage the effects of the disease.

  • Johns Hopkins Medicine: Center for ALS Research-offers latest research, clinical trials, and a glossary.

  • For ALS Digest Newsletter Info

  • Doctor's Guide to ALS

  • Patient and Caregiver Resource Manual: this Bay Area manual has sections about healthcare, legal issues and communication.

  • The BUILD website offers chat and bulletin board interaction for people with MND/ALS in the UK, as well as their caregivers and healthcare professionals.

ALS Hospital/Clinic and Testing Information:
These resources are intended to assist ALS patients in finding clinical care appropriate for them.
Clinical Trial Information:
These resources are intended to help patients find appropriate assistance, such as homecare.
Caregiver/Nursing Information:
These resources are intended to help patients find appropriate assistance, such as homecare.
  • Muscular Dystrophy Association: Contains caregiver information.

  • Homecare Online: Committed to representing the interests of the home care and hospice community..

  • Visiting Nurses Associations of America: Visiting nurse information on both skilled medical care and non-skilled care. Please call (800) 426-2547.


  • Extra Hands for ALS The Jack Orchard ALS Foundation, a generous supporter of ALS TDI, has launched a program called Extra Hands for ALS to assist patients and their families in coordination with youth interested in community service. In the volunteer-based program, students help patients and their loved ones by housecleaning or yard work, answering mail or email, reading aloud or providing company - whatever you need in your home. In addition, they participate in public awareness events to teach their peers and communities about ALS. To find out more about Extra Hands for ALS or help launch the program in your area, please visit www.jackorchard.org or call 314.997.2311.

Medication Assistance/Insurance Information:
These resources are intended to help patients find information related to insurance and financial assistance.
  • Supplemental Security Income: For information on Supplemental Security Income, contact your local Social Security office for more information, or call (800) 772-1213

  • Medicare: For information on Medicare, please call your local Social Security office or write to Health Care Financing Administration, Inquiries Staff, Room GF-3, East Lowrise Building, Baltimore, MD 21207.

  • Medicaid: For information on Medicaid, please call your local state welfare office or write to Health Care Financing Administration, Inquiries Staff, Room GF-3, East Lowrise Building, Baltimore, MD 21207.

  • National Organization for Rare Diseases: Please visit for drug assistance program information.

  • For assistance with insurance companies to access funding for treatments and care, please call Leslie Corin-Ash at the ALS Association - phone number 781-326-8884 x11

Search Engines/Reference Sites:
These search engines and reference sites can assist patients and supporters in finding studies conducted on ALS and when searching for any other information, resources, organizations, etc. related to ALS.
Links to nutraceutical information:
These resources are intended to assist patients and supporters when researching nutraceuticals (vitamins) as treatment options.
Drug/Pharmaceutical Information:
These resources are intended to assist patients and supporters when researching pharmaceutical treatment options.
ALS Newsletter/Chat & E-mail Forums:
  • ALS Digest: A patient forum via email that will connect you to others in the ALS community. Please email bro@MET.FSU.EDU and ask to subscribe.

  • ALS/MND Research Mail List: Abstract research updates on ALS sent out regularly. Please visit to subscribe to the list.

  • ALS Chat Rooms: An opportunity to chat with other patients, doctors, researchers and public awareness advocates. Please visit for more information on the chat room discussions available, and how to register for the chats.

  • Living with ALS e-group: An avenue for persons living with ALS and their caregivers to communicate with the ALS community, to share information, ideas, support and fellowship. Visit http://groups.yahoo.com and type "Living with ALS" on the group search. Submit your information for membership. You will receive a confirmation email, and then begin receiving the postings according to the specifications you request.

  • Accordant Health Services, Inc.: A patient service group that offers live forums, chat rooms, health news, a library, clinical trials, ask the expert, message boards, resource center and health and wellness. You must register to use this site. Registration and membership is free.

  • ALS Links.com: Offers links to PALS' websites.

Other Useful Websites:
Books:
Below are a sampling of books that may be helpful as patients and supporters strive to make informed treatment decisions and live each day as fully as possible.