February 11th marks the ninth annual International Day of Women and Girls in Science, which serves as an opportunity to recognize the achievements of women working in science, technology, engineering, and mathematics. To celebrate, we are shining a spotlight on Annie Collins, one of our 2023 Milton Safenowitz Postdoctoral Fellows, and how she is helping move the development of new ALS treatments forward.

The type of care that people with ALS receive affects survival and quality of life. That is why the ALS Association is committing nearly $2 million over the next two years to support research focused on optimizing the effectiveness, efficiency, and accessibility of ALS care. These funds, granted through the new Quality of Care Research Awards, will be distributed across five projects that focus on the health and care for people living with the disease.

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 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.

Learn about the five bright, young researchers from prestigious academic institutions across the country who have been selected to join The ALS Association’s 2023 Class of Milton Safenowitz Postdoctoral Fellows.

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.

Dr. Agessandro Abrahao, a professor of neurology at the University of Toronto and a neurologist at Sunnybrook Health Sciences Center, spoke about a new partnership between The ALS Association and the Focus Ultrasound Foundation and his work as a focused ultrasound investigator at the Harquail Centre for Neuromodulation.

We talked with including Dr. Kevin Rhine, a postdoctoral scholar at the University California San Diego, to learn more about his research, as well as his interests outside the lab.

We talked with Dr. Caiwei Guo, a postdoctoral fellow at the Stanford University School of Medicine, to learn more about her research, as well as her interests outside the lab.

We talked with Dr. Jayakrishna Shenoy, a postdoctoral research associate at Brown University, to learn more about his research, as well as his interests outside the lab.

Since 2019, The ALS Association Roundtable Program has provided a forum for candid, facilitated discussions that guide our strategy for ALS care, advocacy and research. Here are just a few examples of how Roundtable discussions have been turned into positive action for people living with ALS and their families.

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.

We talked with Dr. Miriam Linsenmeier, a postdoctoral fellow at the University of Pennsylvania’s Perelman School of Medicine, to learn more about her research, as well as her interests outside the lab.

Dr. Laura Ranum, director of the University of Florida’s Center for NeuroGenetics and the Kitzman Family Professor of Molecular Genetics and Microbiology, is currently conducting a phase 2 trial for C9orf72-linked familial ALS with support from the Association’s Clinical Trial Awards Program. 

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.

In March 2022, after several months of multiple doctor visits and many tests, Jacob Harper was diagnosed with P525L FUS ALS—a nano-rare version of ALS only found in people under the age of 25. Jacob is on the Jacifusen clinical trial trying to slow progression, as he shares his testimony with people from all over the world.

The FDA announced it has granted accelerated approval to tofersen, a treatment for people living with mutations of the SOD1 gene. This is a significant victory for the ALS community and our efforts to make ALS livable for everyone, everywhere, until we can cure it.  

While knowledge is power in many circumstances, knowing you have lost several members of your family to familial ALS, and understanding you may also carry the mutated gene, can be a heavy burden to live with. With technology continuously evolving, new potential treatments in the ALS research pipeline through clinical trials and the ability to get answers through a genetic test, there are more factors to consider today than ever before. Peter Hackett shares his family's ALS story and what led him to the decision of taking the genetic test.

The FDA advisory committee vote on tofersen Wednesday was an exciting and critical moment in the ALS community’s efforts to find new treatments and cures. The committee voted unanimously to recommend accelerated approval of the new treatment.

Larry Falivena, member of The ALS Association’s Board of Trustees who is living with ALS, shares his unique experience with the disease and his perspective on genetic testing.