Since 1985, we have

  • Provided direct services to thousands of patients through a wide network of support groups, an Information/Help line, public programs and personal communications.
  • Published The UPDATE, a widely circulated and highly respected 50-page publication with an international readership from 1985 until 2003. It provided information for healthcare providers and patients, including updates on medical research. Many of the excellent articles are available on this website.
  • Raised thousands of dollars for research.
  • Published a Physician’s Primer (1991) which was distributed to all physicians in Massachusetts and requested by patients and clinicians throughout the world. It was the only such handbook for physicians available in the world until very recently.
  • Published a Disability Handbook. This unique, detailed book on the ins and outs of applying for disability in the U.S. is available on this website.
  • Published patient and healthcare provider information online since 1997.
  • Coordinated with other Associations—regional, national and international.


More about us

History of the Association

Our ongoing programs

Patient services