Even though Bill has been gone for several years, I continue to receive information regarding clinical trials. In the past, I've discarded the notices....I don't need them. However, I thought it might be useful to post the information here.
Department of Neurology @ Emory University School of Medicine
"...We will be starting a clinical trial of a drug called arimoclomol (pronounced ari-mok-low-mole) for people with rapidly progressive forms of ALS caused by mutations in the SOD1 gene. " "If the genetic cause of ALS in your family is unknown, then we'd like to encourage you to contact us so that we can find out if the SOD1 gene is the cause. Please contact Cathy Raiser, study coordinator at firstname.lastname@example.org or (404) 712-8578." "If you have ALS and we can establish that a change in the SOD1 gene is the cause of ALS in your family, then you may be eligible to participate in this clinical trial. "
Michael Benatar MBChB,DPhil
Assistant Professor of Neurology and Epidemiology
There are a number of links to clinical trial sites. Here are a few I've found. Please feel free to add to the list.