ALS is certainly a serious condition, and there is nothing funny about it, but many funny moments can happen. For my caregiver husband and me, holding on to a sense of humor is such an important part of our relationship that we can’t imagine letting a day go by without…
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AC Immune and WuXi Biologics have announced a partnership to advance the development of an investigational antibody treatment that targets the protein TAR binding DNA protein 43 (TDP-43) for treating certain central nervous system (CNS) conditions, including amyotrophic lateral sclerosis (ALS). Having identified and developed the anti-TDP-43…
The campaign for a league-wide annual Lou Gehrig Day recently received a major boost as all 30 Major League Baseball (MLB) teams endorsed an effort to honor the late New York Yankees star first baseman and raise awareness of amyotrophic lateral sclerosis (ALS). Lou Gehrig Day has…
My office offers retreat, in that it only has wall décor we acquired before ALS upended our lives. Over my book case is a framed painting of Maine’s Bar Harbor that my husband, Todd, and I bought on our honeymoon. We purchased the piece from a local artist who then…
The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases. “The RareLaunch program is…
“Your lifelong membership is free, Keep a-giving each brother all you can. Oh, aren’t you proud to be in that fraternity, The great big brotherhood of man?” Those lines, written by Frank Loesser for the musical…
Although it’s hard to find much to celebrate in 2020, this year happens to mark an important milestone for my husband and me. I’m celebrating achieving 10 years of living with ALS, and for my husband, 2020 marks a decade of his role as a caregiver — to me. I…
A newly identified type of immune cell — a kind of immature neurophil or white blood cell — was found to be responsible for the regeneration and survival of eye and spinal cord nerve fibers that is known to be possible in mice with induced nerve injury,…
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…
Eli Lilly and Company has acquired Disarm Therapeutics and its emerging therapies designed to prevent axonal degeneration in neurodegenerative disorders, including amyotrophic lateral sclerosis (ALS), multiple sclerosis, and peripheral neuropathy. Disarm’s new class of disease-modifying treatments, called SARM1 inhibitors, target the central driver of axonal…