Following the lack of action by the FDA to expedite approval of AMX0035, an experimental treatment for ALS, The ALS Association today called on the agency to follow its own guidance and move with the urgency of its Canadian and European Union counterparts. Health Canada and the European Medicines Agency (EMA) are working with Amylyx, the company that makes AMX0035, to move the treatment toward approval.
I’m proud to be the third person profiled in this series, and I’m happy to be able to tell you my story and why I continue to fight. ALS is a devastating disease. There’s no way to sugarcoat it. While the statistics say the disease typically affects people between the ages of 40 and 70, it can strike anyone at any time, even someone as young as 16 years old.
The ALS Association’s Seed Grants support generation of preliminary data that will ultimately serve as the basis for larger grants that fund impactful research in ALS.
Despite divorce amidst the ALS diagnosis, Gladys and Hector Villalobos remain friends and proud grandparents. Their hearts remain full of love for their family.
Mallinckrodt is permanently halting its Phase 2b PENNANT Study (MNK14042068) investigating the safety and efficacy of a hormone injection for the treatment of ALS. Acthar Gel is a highly purified preparation of Adrenocorticotropic hormone (ACTH) injected either beneath the skin or into the muscle. It is approved by the FDA for the treatment of 19 indications including acute exacerbations of multiple sclerosis in adults.
Meet Suzy Shealy from Columbia, S.C. Suzy is a wife, Gold Star mother (son Army Sgt. Joseph Derrick), grandmother, sister, person living with ALS and a tireless ALS advocate. We recently sat down with Suzy to get to know her and learn how ALS impacts her life.
As an occupational therapist, Katie Adams had a keen sense of what was happening to her body when her ALS symptoms first started and was pretty sure she knew why. Little did she know her intuition would not only prove to be correct but would lead her to fighting for access to the care and equipment she needed just to live.
The ALS Association has formally objected to the use of controversial measures to evaluate ALS drugs that can make it harder to find effective new ALS treatments and get them to the ALS community as quickly as possible. These measures have been identified by the National Council on Disability as being inherently discriminatory against people with disabilities.
May is ALS Awareness Month. Of course, this year is different than past years as the world has changed significantly in the face of a global pandemic. However, ALS doesn’t stop and neither will we. During the month of May we have a full calendar to increase awareness of ALS and of the severe physical, emotional, and financial burdens it creates for people living with the disease and their families. We’ll be talking about the disease and its burdens in the context of the COVID-19 public health crisis, which exacerbates the difficulties people living with ALS already face in number.