With the Food and Drug Administration’s approval of the first gene-targeted therapy for ALS – and at least nine more in clinical development – genetic counseling and testing has become increasingly important. However, genetic counseling and testing is still not routinely offered to people with ALS in the United States.
Over a year ago, Sophia Harding became a volunteer for The ALS Association, a fourth-generation member of the Barnett family to join the fight against ALS. In the midst of the COVID-19 pandemic, she moved to Florida and joined the team at The ALS Association Florida Chapter as a Phone Friend Volunteer.
The Steve Gleason Enduring Voices Act (S. 1132 and H.R. 2465), which would permanently fix the current Centers for Medicare and Medicaid Services (CMS) policy limiting access to Speech Generating Devices (SGD) for people with degenerative diseases, was included in the government funding package approved by the U.S. House of Representatives last night.
Biogen has initiated a phase 3 clinical trial evaluating tofersen (previously called BIIB067), an antisense oligonucleotide (ASO), a type of antisense drug, targeting superoxide dismutase (SOD1), for the potential treatment of ALS. The trial is now enrolling and aims to enroll approximately 60 people with SOD1 ALS.
Our ALS support groups are designed with one thing in mind – enhancing quality of life and supporting families impacted by ALS regardless of where they live. Addressing the unique challenges the disease presents, they follow best practices and join people together who are dealing with similar difficult circumstances.
When my husband Tom was diagnosed with ALS, we were embraced by the ALS community. But as his health declined, I didn’t really feel ALS was what was stealing my husband from me. I felt more connected to people losing loved ones to frontotemporal dementia, also known as FTD. I did lose my husband to ALS… a particularly cruel and nasty form of ALS that includes FTD.