The Greater New York Chapter of The ALS Association has commemorated a pivotal caregiver from ALS history with a luncheon named in honor of Eleanor Gehrig, the wife of famed baseball hero Lou Gehrig.Continue reading The Iron Woman Behind the Iron Horse
Anthony Vick spent 16 years serving his country in the Army and Air Force Reserves, including 10 years in the civil service. Vick says he was lucky to be able to serve his country, service that came to an end in 2017 when he was diagnosed with ALS.
“It was very slow to come about. It took about two years, probably 50 doctor visits, two surgeries and was set up to have a third surgery on my spine, and the week before I went in, my doctor referred me to another neurologist,” Vick says.
It was during that visit to the neurologist that Vick first learned that his symptoms might be related to ALS.Continue reading Anthony Vick: “Faith Over Fear”
Maya Bulmer was thrust into the role of caregiver at a young age. Like many seniors in high school, Maya spent the 2018-2019 school year filling out college applications, readying for the next chapter in her life.
“I had it all planned out, I had full tuition, I had something that I wanted to do in a career that I was interested in,” Maya said when we sat down to talk earlier this year. Maya’s mother, Elizabeth McCormick, is the director of clinical education programs at the University of TulsaContinue reading Maya Bulmer: “Today is what we have”
The ALS Association and its partners submitted comments to the Food and Drug Administration to further inform the agency’s implementation of the final guidance on the development of drugs and treatments for ALS. The comments underscore the need for urgency and commend the FDA for including voices from our community in its rule making process. Click here to view the comments.
The ALS Association has been working closely with members of the ALS community and the FDA to create a landmark, patient-led guidance initiative that will help drive ALS drug innovation more quickly from the laboratory to the patient, providing feedback to the agency, hosting a national workshop, and creating a report that informed finalization of the guidance.Continue reading ALS Community Responds to FDA Guidance Document with Call for More Urgency, Flexibility
A bill championed by The ALS Association was introduced in Congress today that would remove noninvasive ventilators from Medicare’s competitive bidding program. Reps. Morgan Griffith (R-Va.), Peter Welch (D-Vt.), Gus Bilirakis (R-Fl.), John Larson (D-Ct.), and Darren Soto (D-Fl.) have introduced H.R.4945, the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act of 2019.Continue reading ALS Association Joins Coalition Partners to Lead Fight for Access to Noninvasive Ventilators
November is National Family Caregivers Month. Join The ALS Association in honoring caregivers throughout the month.
“Being a caregiver of someone with ALS is incredibly challenging, and my role hasn’t even begun to be that physical yet,” said Jen LeVasseur. Her husband, Noel, was diagnosed with ALS in 2017, just over a year after they were married.Continue reading Show Appreciation to a Caregiver During National Family Caregivers Month
A global, centralized, cloud-based repository of ALS genetic data is being assembled with funding from The ALS Association. This is the first such repository of its kind.
Much of the research aimed at finding a cure for ALS is in the area of genetics. Such work requires genomic sequencing, a process whereby individuals’ genes are mapped in a way that can be compared to the genes of others who do not have ALS in an effort to identify variations that may be factors in the development or progression of disease.Continue reading ALS Association Contributes $3.3 Million to Fund Groundbreaking Genome-Sequencing Database