The urge to support, or be supported, is often accentuated at times of great challenge, or uncertainty. As anyone living with ALS or being an ALS caregiver knows, this disease can bring plenty of both. That’s why The ALS Association provides support groups in every state.
Today, the ALS Association advocated for Vermont to enact Medigap premium protections against higher premiums for persons under age 65, a proposed benefit to 50% of our Vermont ALS community.
Today, we filed comments with the FDA imploring them to ask the right question when it reconvenes its advisory committee in September to consider a new drug application (NDA) for AMX0035.
A committee convened by the Institute for Clinical and Economic Review voted overwhelmingly on August 19 that oral edaravone and AMX0035 provide meaningful clinical benefit to people with ALS and have a positive impact on quality of life, but that neither drug provides sufficient value to justify the presumed cost to insurers.
The postdoctoral researcher at King’s College London discussed the mechanistic role SARM1 gene mutations play in the development and progression of ALS.
Pat was a former solutions team lead at Esri, a geographic information system (GIS) company, and spent his 25-year career in GIS creatively using mapping technology to solve real-world problems in the utility industry. Forced to retire in 2018 due to the progression of his disease, he had no idea where his passion for mapping and data would take him. “After my diagnosis, I wanted to bring GIS to the ALS battle, but wasn’t sure where to start,” says Pat.
The "ice bucket challenge" back in 2014 brought about so much awareness that it became a viral sensation, raising a total of $115 million for research.
The results of research by scientists at the University of Edinburgh and at the University of Oxford have found that a drug typically used to treat enlarged prostates and high blood pressure could also have promise as a potential new therapy for amyotrophic lateral sclerosis (ALS), the most prevalent form of motor neuron disease (MND).
In July, Huet and his partner, Brian Hubert, received a Christmas in July gift that was full of gift cards. It was something that would cover groceries. It was just something that helped.