October 2020 Foundation eNews

lesturner Foundation eNews, Home Page, Research & The Les Turner ALS Center, Support Services

Join our 10th Annual Les Turner Symposium on ALS – Monday, November 9

Registration is now open for our 10th Annual Symposium, hosted by our own Les Turner ALS Center at Northwestern Medicine. This year’s event will be held virtually on Nov, 9, and features presentations from leading ALS researchers and clinicians from both inside and outside the Center. Our new Symposium website includes speaker bios and abstracts, schedule for the day and a direct link to registration.

We are excited to present Sabrina Paganoni, MD, PhD, Assistant Professor at Harvard Medical School and physician-scientist at the Healey Center for ALS at Massachusetts General Hospital, as our keynote speaker.

Dr. Paganoni is co-principal investigator of the HEALEY ALS Platform Trial, which is currently enrolling at our Lois Insolia ALS Clinic and the principal investigator on the Amylyx Pharmaceuticals Phase II/III CENTAUR clinical trial. Join us on November 9 via livestream for the Les Turner Symposium on ALS>>

 

Coming Soon: New Online ALS Educational Series!

This Fall, the Foundation is rolling out our new online education series that will provide information, insights and empowerment to those living with ALS and their family members as well as other decision-makers. 

The monthly series will cover a variety of current topics, including clinical trials, genetic testing, telemedicine, multidisciplinary care and complementary alternative medicine, just to name a few. The format will range from informational webinars to interactive Q&As with the Foundation’s Support Services team and clinicians from our Lois Insolia ALS Clinic, as well as regular blog posts on our website.

The monthly series will cover a variety of current topics, including clinical trials, genetic testing, telemedicine, multidisciplinary care and complementary alternative medicine, just to name a few. The format will range from informational webinars to interactive Q&As with the Foundation’s Support Services team and clinicians from our Lois Insolia ALS Clinic, as well as regular blog posts on our website. Les Turner ALS Foundation Support Services>>

 

Biogen’s SOD1-ALS (VALOR) Clinical Trial at Northwestern

Our Lois Insolia ALS Clinic at Northwestern Medicine is enrolling qualified patients in the BIIB067 (Tofersen) for SOD1-ALS (VALOR) study. A mutation in the SOD1 gene is believed to be a genetic driver of disease in approximately two percent of all ALS cases.  

In July, the New England Journal of Medicine published positive results from a Phase 1/2 study of Tofersen for the potential treatment of SOD1. Researchers are studying the investigational therapy because they believe it may reduce the amount of harmful or toxic SOD1 proteins and slow the progression of the disease. Northwestern is only participating in Part C of the VALOR study, which recruits “Fast Progressor” forms of the SOD-1 gene. Our Center has been a leader in SOD-1 research over the past three decades. For more information on the SOD1-ALS (VALOR) study, visit our Clinical Trials page.>>