FREQUENTLY ASKED QUESTIONS

What is ALS?

• ALS is also called Lou Gehrig’s Disease or Amyotrophic Lateral Sclerosis
• It is a degeneration of motor nerve cells in the brain and spinal column
• With disease progression, muscles become weak and small (atrophic)
• Between 20 000 and 30 000 Americans are living with ALS
• Most people who get ALS are between 40 and 70 years of age, but one can get it as young as 20 or as old as 90

What is the purpose of ALS Connection?

• Identify opportunities to improve the quality of care for patients with ALS
• Learn more about the disease evolution
• Obtain long-term follow up data and information about quality of life as well as outcome of patients with ALS
• Provide patients, caregivers and healthcare providers with information about ALS and ALS related topics
• Provide data for ALS research

Who runs ALSconnection?

• ALS Connection is a patient driven ALS registry to collect data from ALS patients in North America.
• ALS Connection is coordinated by Dr. Robert Miller, Dr. Jonathan Katz and Dr. Catherine Madison, all of them physicians who treat ALS patients in a multidisciplinary clinic (The Forbes Norris MDA/ALS Research Center) in San Francisco, CA.
• The project receives funding from the Muscular Dystrophy Association (MDA).
• Programming staff of the Department of Epidemiology, University of California, San Francisco (UCSF) developed the data base and website and monitors them to ensure complete confidentiality of the data.
• The scientific advisory board includes: Dr. Stanley Appel, Dr. Walter Bradley, Dr. Robert Miller, Dr. Hiroshi Mitsumoto, Dr. Stephen Ringel, Dr. Tim Miller and Dan Moore, Ph.D.