Before his diagnosis, John Russo had two fears: the first was getting attacked by a shark while fishing at night, and the second was being diagnosed with ALS. He managed to avoid the sharks, but not ALS. After taking a few weeks to process what the rest of his life would look like, he realized he needed to face down his biggest fear and keep going. He found a new purpose: making life better for people living with ALS across the country, as well as deepening research efforts to learn more about the disease.
We recently talked with Bandon Staple, one of this year’s award recipients, to learn a little more about his connection to ALS, what receiving the scholarship means to him, and what his future plans are in healthcare.
We spoke with Renée Hetzler, physical therapist at the University of Rochester Medical Center’s multidisciplinary ALS and Huntington Disease Clinics, who shared her thoughts and experiences with patients and insights about the importance of physical therapy for people living with ALS.
We recently talked with Cierra Abbott, one of this year’s award recipients, to learn a little more about her personal connection to ALS, what receiving the scholarship means to her, and what her future plans are.
We recently talked with Hastings Moffitt, one of this year’s award recipients, to learn a little more about her connection to ALS, what receiving the scholarship means to her, and what her future plans are in healthcare.
More than 43,000 people signed The ALS Association’s petition, launched September 3 with I Am ALS, to call on the FDA and Amylyx Pharmaceuticals to work together to speed up the process of getting AMX0035 available for people living with ALS as quickly as possible.
We recently talked with Chandler Brestel, one of this year’s award recipients, to learn a little more about her connection to ALS, what receiving the scholarship means to her, and what her future plans are in healthcare.
Just as ALS did not stop for COVID-19, the Walk to Defeat ALS® did not stop. The simple fact is, we can’t wait for COVID-19 to end before we walk. Instead, chapters across the country have been coming up with innovative ways to move this signature event into virtual spaces, creating new opportunities for our communities to come together in unity to keep building a world without ALS.
We can’t wait until this pandemic is over to accelerate our pursuit for improved treatments and a cure. The fact that the whole world is affected by something we cannot control is not an excuse to wait.
People with ALS and their caregivers face a substantial burden accessing and understanding insurance coverage and paying for medical treatments and services, causing high stress, added work burden and debt for the ALS community.
Increased access to telehealth has long been a priority for The ALS Association and its advocates, as many people living with the disease have difficulty traveling to multidisciplinary clinics. In fact, many of the policy changes the Association pursued long before the pandemic have been enacted in response to the COVID-19 public health crisis. It is now critical that we fight to make those changes permanent.
We recently talked with Dr. Emily Thompson from the Rothstein Lab at Johns Hopkins University to learn about her unique research project focused on how the loss of a cortical astroglia subpopulation exacerbates dendritic and synaptic defects of upper motor neurons in ALS.
We recently talked with Dr. Gerbino from the Maniatis Lab at Columbia University to learn about her unique research project focused on identifying how mutations in TBK1, one of the genes associated with ALS, differentially affect the cells of the spinal cord involved in the pathogenesis of ALS.
We recently spoke with Dr. Paul McKeever from the Rogaeva lab at the Tanz Centre for Research in Neurodegenerative Diseases at the University of Toronto. Paul’s current research project is focused on uncovering the molecular programming which make individual brain cells and populations of cells susceptible or resilient to the disease process so that new therapeutic avenues can be developed for patients with ALS and FTD.
We recently talked with Dr. Lauren Laboissonniere from the Ranum lab at the University of Florida to learn about her unique research project focused on the development of novel therapeutics for the treatment of C9orf72 ALS/FTD and related repeat-associated disorders.
Biogen, a partner of The ALS Association, recently published promising results from its phase 1–2 Trial of Antisense Oligonucleotide Tofersen for SOD1 ALS and is now actively enrolling participants for their Phase 3 Valor study. It also announced that there is an open-label extension available in the study.