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.
Today marks the 6th anniversary of the very first ALS Ice Bucket Challenge, where people around the world came together to raise awareness and funds to end ALS. Since then, thanks to the overwhelming kindness and generosity of our supporters, The ALS Association has been able to commit $111,449,730.53 to research that's led to amazing discoveries, bringing us ever closer to treatments and a cure for this devastating and always fatal disease.
We recently talked with Dr. Zhe Zhang from the Sun Lab at the Johns Hopkins School of Medicine to learn about her unique research project focused on screening for expansion in the C9ORF72 gene, the most common genetic cause of ALS.
Social distancing measures put in place in response to the COVID-19 pandemic created a unique dilemma for chapter staff who teach caregivers how to use critical assistive living devices that enhance the quality of life for their loved ones living with ALS.
Research supported by The ALS Association found that blood plasma analysis could be key to speeding up the process of diagnosing the disease and monitoring disease progression. The research was led by Dr. Michael Bereman from North Carolina State University and supported by a $100,000 grant from The ALS Association, including funding from the North Carolina Chapter.
For people living with ALS, reduced physical mobility and the ability to communicate often cause “Smart” homes – in which household items become connected and are controllable with the use of technology – can greatly improve accessibility and be life-changing for people living with the disease.
ALSUntangled, an award-winning website dedicated to helping people with ALS figure out whether alternative and off-label treatments are effective and appropriate, has created a list of 10 red flags people with ALS should be aware of when considering off-label treatments they read about on the Internet.