Today, we are happy to feature Dr. Nicholas Olney, this year’s recipient of the prestigious Clinical Research Training Fellowship in ALS Research Award given in partnership with the American Academy of Neurology (AAN). Dr. Olney is currently working on an ALS biomarker project aimed at developing clinical markers of disease progression, a major unmet need in ALS, at the University of California at San Francisco (UCSF) School of Medicine under the mentorship of Drs. Howard Rosen, Cathy Lomen-Hoerth and Bruce Miller.
A workshop for people living with ALS, their caregivers, and heck-for all of us! A workshop about self-care and direction in the midst of ALL of life’s curveballs.
Every year on June 21, The International Alliance of ALS/MND Associations marks Global ALS/MND Awareness Day, a day of recognition for people living with ALS/MND around the world, and of those everywhere working in the search for causes, treatments and ultimately a cure. This is an opportunity for everyone, everywhere in the ALS/MND community to get involved.
Since 2019, the Association Roundtable Program has provided a forum for candid, facilitated discussions to help shape the Association’s strategic planning efforts and find solutions to make ALS a livable disease while urgently finding cures.
The United States Department of Veterans Affairs has made RELYVRIO available for the treatment of ALS for veterans who are living with the disease who receive care at VA clinics or ALS specialists, becoming one of the first health care payers or insurers to provide access to the drug.
In most people’s journey living with ALS, they will be faced with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. The following resources have been developed to provide you with the knowledge you need to help make this decision with the minimum amount of stress and difficulty.
The ALS Association recently sent letters to 43 of the largest insurance companies and health care payers to make RELYVRIO, which was formerly developed as AMX0035 and approved by the FDA for use in the treatment of ALS in September, available and accessible for people living with ALS.
The ALS Association is excited to announce $1.4 million in grants to help develop technology that will enhance the quality of life for people living with ALS. The funding supports research in fields ranging from assistive communications and noninvasive ventilation to wearable sensors and a brain-computer interface.