Entries by admin

fALS Connect patient registry launched

fALS Connect is an online registry for people with familial ALS as well as their family members. fALS Connect aims to connect fALS families with scientists who are engaged in fALS research. Both affected individuals as well as unaffected family members are encouraged to sign up. Click the fALS Connect logo to learn more.

VCP as a cause of ALS

Dr. Benatar and colleagues at NIH (Dr. Traynor), Italy (Dr. Chio) and St. Jude’s hospital (Dr. Taylor) recently identified mutations in the VCP (valosin-containing protein) gene as a cause of familial ALS. The ALS Association has since awarded Dr. Benatar and Dr. Taylor a grant to further study the relationship between VCP and ALS. Read […]

ALS-TDI Webinar

Dr. Benatar and Dr. Fernando Vieira recently co-hosted an ALS-TDI webinar in which they discuss what is known about the genetics of ALS, how this information is being used in the lab to identify biological pathways and potential therapeutics, as well as an overview of current clinical research activities and opportunities for patients and families […]

Net Change Week

Dr. Benatar recently attended Net Change Week, an annual event hosted by the Social Innovation Generation (SiG) at the MaRS Discovery District in Toronto, where he led one of the Future Lab teams. Net Change Week is dedicated to exploring the intersection between social technology and social change. The Future Labs bring people with expertise […]

Meet Our New Research Coordinator

The Pre-fALS study is growing, so we are expanding our research team! Mike is a recent graduate of Emory University, where he majored in Neuroscience and Behavioral Biology. He will be assisting Sue with the Pre-fALS study. In addition to study logistics, Mike will play an active role in subject enrollment and data collection. Mike […]

Familial ALS Special Session at ALSA’s National ALS Advocacy Day

Thanks to everyone who traveled to Washington, DC for ALS Advocacy Day. Our familial ALS session was a great success. Dr. Benatar spoke for about 45 minutes, followed by a lively Q&A session. After the talk, we all enjoyed pizza and soda while discussing the special needs of fALS patients and their family members who […]