Our grandfather, Herbert Hoffman, died from ALS in February 1943. This was less than two years after Lou Gehrig passed away and his name became forever attached to this disease. We never knew our grandfather. But we knew and loved and treasured our time with our uncle, Hugh Hoffman. Our uncle’s incredible donation will be spent to expand access to existing multidisciplinary ALS clinics and to certify new ones. In addition, the donation will fund new and promising clinical trials.
There is an urgent need for new and improved therapies for ALS, as there is still no cure. To help accelerate drug development and get promising treatments one step closer to regulatory evaluation, the ALS Association has committed nearly $4 million to support four early-stage clinical trials through our Hoffman ALS Clinical Trial Awards.
While the number of ALS clinical trials has greatly expanded over the last five years, the number of people living with ALS participating in this research remains low and highly variable across trial sites. Our five 2023 Trial Capacity Award winners are working hard to eliminate barriers to trial participation.
In order to make ALS a livable disease and ultimately find a cure, we need to increase the number of clinical trials and make it easier for more people to participate in those trials. No one knows this better than Dr. Merit Cudkowicz, Director of the Sean M. Healey & AMG Center for ALS and Chief of Neurology at Massachusetts General Hospital.
On a recent Connecting ALS podcast episode, we spoke with Dr. Terry Heiman-Patterson, Professor of Neurology at the Lewis Katz School of Medicine at Temple University and Director of the Temple MDA/ALS Center of Hope, to learn more about her work looking into ways to expand access to clinical trials for historically underserved populations.
This last year has seen incredible progress in the fight to create a world without ALS. The FDA approval of Relyvrio (AMX0035) in 2022 and Qalsody (tofersen) last month are significant steps in the effort to make ALS a livable disease. As we celebrate the success of these long-term investments, we continue to fund the next generation of possible treatments, as well as the researchers that are searching for them.
The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and the Northeast ALS (NEALS) Consortium announced topline results from Regimen D of the HEALEY ALS Platform Trial, which is evaluating pridopidine versus placebo in adults with ALS.
The ALS Association has awarded $4.9 million to help speed the testing of ALS therapies through clinical trials. The Association’s inaugural Trial Capacity Awards will support efforts at 13 established and emerging ALS clinical trial sites to increase the number and diversity of people living with the disease who have the opportunity to participate and improve the efficiency and pace at which these studies are conducted.