For Renato, despite having been a successful business owner and a politician, his family came first – even after his ALS diagnosis. Caring for his family and specifically his wife was his top priority. As many of us know, being …
July 2022 Foundation eNews
Foundation News The Foundation represents the European Network to Cure ALS (ENCALS) In June, our CEO, Andrea Pauls Backman, attended the European Network to Cure ALS (ENCALS) conference in Edinburgh, Scotland, along with 650 ALS/MND researchers, patients, and advocates. …
Faces of ALS: Frank Granata
Faces of ALS: Frank Granata – Staying active and enjoying life As a finance executive, Frank Granata often traveled for business. In 2018, after having lived in India for two years for a work assignment, Frank began having neurological issues …
ALS Organizations Unite in Support of AMX0035 Approval
People living with ALS have no time to waste. The FDA must act urgently on new therapy approval. Amyotrophic lateral sclerosis (ALS) is a horrific neurodegenerative disease that affects over 30,000 Americans. It kills so swiftly that people with ALS …
Faces of ALS: Erin Reardon Cohn
We’re thrilled to welcome Erin Reardon Cohn, Executive Vice President of First Bank Chicago, to her new role as chair of the board of directors. Erin joined the board in 2019 and served as the Foundation’s treasurer for the last …
June 2022 Events eNews
Event News Welcome New Strike Out Teams! One thing we look forward to at our community events is seeing all the new faces who get involved every year! We’re inspired by meeting the people who participate and form ambitious, dedicated …
June 2022 Foundation eNews
Foundation News The 34th Annual Hope Through Caring Gala: Reunited and it feels so good! Through your generous donations, we raised nearly $550,000 to support research, clinical trials, and, most of all, personalized care for people living with ALS. …
New results show promise in treatment of SOD1-ALS
New results from the Phase 3 clinical trial of tofersen, a drug in development by Biogen, have shown promise in treatment of superoxide dismutase 1 (SOD1) amyotrophic lateral sclerosis (ALS). According to the 12-month data, earlier initiation of treatment with …
NU-9 Update: Experimental drug repairs upper motor neurons in mouse model
As connecting fibers between motor neurons, axons help deliver vital messages between the brain and the spinal cord. For people living with ALS, deteriorating axons cause that connection to break, contributing to paralysis and death. Early research on NU-9, an …
Faces of ALS: Eloise Nilges
A Lasting Legacy of Love, Faith, and Adventure Recently, Terri experienced her first Mother’s Day without her mom, Eloise. In this month’s “Faces of ALS,” we learn more about Eloise’s journey with ALS and how Terri continues to honor her …
