Other Resources

ALS resources

These resources are intended to direct patients and supporters to overall informational resource and support services.

  • Wikipedia.org
  • ALSSO: A local service organization in Spokane, Washington that provides support and assistance to PALS and their families through volunteerism.
  • 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: San Diego based non-profit raising awareness. Donating to research.
  • 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: Non profit organization founded by people with ALS and their loved ones out of Florida. Over 2500 PALS participating in the March of faces Banner Project.
  • Ride for Life: Non profit out of New York started in 1998 brings community awareness and support research. Offering hope and inspiration.
  • 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.
  • ALS Hope Foundation: 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 Society of Canada: Offers up-to-date information about ALS, and serves patients and caregivers..
  • MDA: National site with information on physicians, clinics, services, blogs, forum, chats group. Offers support groups and newsletters.
  • ALS Society of Ontario: Provides services of PALS, assist people with managing the effects of the disease and raises funds for research.
  • Doctor's Guide to ALS
  • 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.
  • Jackson Labs: What are the genetic and environmental causes of ALS? How can we predict the onset of this disease? And how can we prevent, treat or even cure it? Researchers at The Jackson Laboratory are investigating these questions every day. Located in Bar Harbor, Maine.
  • ALS Residence Initiative: The ALS Residence Initiative is committed to improving the quality of life for pALS with compassionate caregiving and state-of-the-art technology.

ALS Hospital/Clinic and Testing Information

These resources are intended to assist ALS patients in finding clinical care appropriate for them.

  • MDA - National site with information on physicians, clinics, services, blogs, forum, chats group. Offering support groups and newsletters.
  • American Medical Association - Provides basic professional information on many licensed physicians in the US. AMA also provides links to condition and illness-related Web resources, medical indexes, government health sites and more.
  • Neurology Channel: - Gives an overview of ALS, symptoms, diagnosis, types and causes, and treatments.
    Please visit here to find a neurologist.
  • A.L.S.C.A.R.E.: The ALS C.A.R.E. Project is a voluntary, physician-directed program to improve outcomes for patients diagnosed with Amyotrophic Lateral Sclerosis. Enrollment completed 6/30/2007. An ALS-FRS Scale online form.
  • International assistance for medical help Information and support online health service.

Resources for Syringomyelia

  • http://en.wikipedia.org/wiki/Syringomyelia
  • Christopher S. Syringomyelia Foundation
    The goals of the Christopher S. Burton Syringomyelia Foundation are to raise and distribute funds to those who are diagnosed and can demonstrate a financial and medical need; assist with short or long term financial assistance while social services are pending or insufficient; raise awareness in the general public in hopes of finding a cure...

  • National Guidline Clearinghouse
    The NGC mission is to provide physicians and other health professionals, health care providers, health plans, integrated delivery systems, purchasers, and others an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation, and use.
Resources for Syringomyelia

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