On one of my recent daily walks, I listened to an “Office Ladies” podcast in which Jenna Fischer shared her ongoing struggle with anxiety. She used the analogy of a backpack to describe the burden she lives with. Some days it weighs her down, while other days she…
Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000 in grants, totaling…
AB Science will suspend recruitment and treatment in all studies involving masitinib, a tyrosine kinase inhibitor being investigated for amyotrophic lateral sclerosis (ALS) and several other conditions. The voluntary suspension follows the identification of a potential risk of ischemic heart disease — a condition of recurring chest…
Today, the National ALS Registry is joining the Major League Baseball to celebrate Lou Gehrig’s life and legacy and to raise greater awareness of amyotrophic lateral sclerosis (ALS). This year’s inaugural “Lou Gehrig Day” on June 2 honors the famous New York Yankees baseball player whose career…
Everyone likes being noticed — for the right things, of course. I like it when others recognize my unique talents and skills or a job well done. I don’t like being noticed because I have to use a rollator to help me walk. Or, because I move more slowly than…
People living with amyotrophic lateral sclerosis (ALS) recently shared their views on the importance of new therapies and incremental gains, and the risks they are willing to take with U.S. Food and Drug Administration (FDA) and industry officials in a virtual meeting hosted by The ALS Association. The…
Researchers at the University of Texas at Dallas (UT Dallas) have received an award from the U.S. Army Medical Research Acquisition Activity to advance their preclinical research of an innovative CRISPR-based gene editing approach to treat one of the most common causes of familial amyotrophic lateral sclerosis (ALS). The two-year…
Last week, I went to the doctor to get a problem with my ear checked out. The medical assistant went through a list of screening questions. The last was, “Are you depressed?” Tears welled up in my eyes. “Yeah, I’m depressed. My husband is terminally ill.” “I’m sorry,” she said.
At face value, the purpose of the National Amyotrophic Lateral Sclerosis (ALS) Registry seems quite straightforward: collecting data on the U.S. population with ALS. But there’s a lot more to it. The registry, funded by the…
With a heightened emphasis on clinical trials, improved care, and identification of risk factors, the ALS Association has created a plan intended to make amyotrophic lateral sclerosis (ALS) “livable” by 2030. While it continues to search for an ALS cure, the nation’s largest ALS nonprofit organization believes that, within a…
