The ALS Association collaborates with some of the best ALS physicians and clinics across the United States to help ensure that people living with ALS have access to the specialized care they need, based on best practices. Disrupted by the pandemic this year and the ability to see patients in person due to quarantines and safety issues, providing care in a clinic setting took on the challenges of major change, but ALS doesn’t stop and neither do we.
I was diagnosed with ALS in 2017. Even in the face of a global pandemic, we can’t wait to pursue the treatments and a cure that will end ALS. The people living with and working to end this disease aren’t quitters. They’re fighters to the last breath.
Clinical trial participants who took AMX0035, a promising new drug therapy developed by Amylyx, showed a statistically significant 6.5 month increase in survivability compared to patients who did not receive the drug in the initial trial, according to data published in the journal Muscle and Nerve in October 2020. These findings validate calls led by The ALS Association and I AM ALS for Amylyx and the FDA to make AMX0035 available as quickly as possible.
ALS doesn’t stop and neither do we. The reality is, people living with ALS can’t wait for treatments and a cure, and just as importantly, the tireless researchers working together around the world can’t wait to make the next breakthrough.
Meet Jinsy Andrews, M.D., MSc, FAAN, Director of Neuromuscular Clinical Trials at Columbia University, and member of The ALS Association Board of Trustees. Dr. Andrews is a clinical neurologist, neuromuscular specialist, and an ALS specialist.
Navigating the world of health care, insurance, and especially Medicare, can be very complicated and overwhelming. Making the right decisions when it comes to healthcare and understanding all of your options is critical for everyone, but even more so for people living with ALS.
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.
Today, in response to the New England Journal of Medicine publication of encouraging clinical trial results showing that Amylyx Pharmaceuticals’ AMX0035 brought statistically significant benefit to people living with ALS, The ALS Association and I AM ALS immediately called on the drug company and the FDA to make the treatment widely available as soon 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.