ALS Association leaders and people living with ALS urged Maryland senators to advance legislation that would prohibit companies that offer life and disability insurance from using the results of genetic testing to deny coverage or influence pricing decisions. John Knowles, a caregiver for his wife, Teri, testified about the impact familial ALS has had on his family. Teri’s twin sister died in 2013, and another sister died in 2020 after living with ALS. John talked about the need for genetic testing for family members and the fear that the results could be used against them.
The ALS Association filed a formal objection to health insurer CIGNA for the company’s decision to exclude Relyvrio from its formulary. In a letter also shared with the Centers for Medicare and Medicaid Services and the Veterans Administration, the Association called on CIGNA to reverse its decision.
The ALS Association has awarded $4.9 million to help speed the testing of ALS therapies through clinical trials. The Association’s inaugural Trial Capacity Awards will support efforts at 13 established and emerging ALS clinical trial sites to increase the number and diversity of people living with the disease who have the opportunity to participate and improve the efficiency and pace at which these studies are conducted.
For many people living with ALS, the decision to have a feeding tube placed, if or when it’s needed, is an important one, and as with many decisions that must be made during an ALS journey, it’s not of the one-size-fits-all variety. In recognition of Feeding Tube Awareness Week, we wanted to share some common concerns and misconceptions about them as well as some resources to help.
The ALS Association of Greater San Diego announced on Dec. 22 the donation of $200,000 from Paul Negulescu, Ph.D., one of two recipients of the 2022 Shaw Prize in Life Science and Medicine.
In 2022, researchers had time to resume projects they were forced to put on hold, and the USA TODAY health team has spent the year reporting on novel procedures, medical discoveries, and advances in disease prevention and treatment.
Someone whose pure love of baseball was passed down through generations like a perfect relay, center to short to home. A person whose passion for the game is a thread throughout his or her life.
Scientists at UF Scripps Biomedical Research have developed a potential medicine for a leading cause of ALS and dementia that works by eliminating disease-causing segments of RNA. The compound restored the health of neurons in the lab and rescued mice with the disease.
Researchers publish positive safety results for prosetin, a MAP4K inhibitor developed through a two-decade-long collaboration between Columbia researchers and a nonprofit, Project ALS