“Run away, run away/ It’s the restless age/ Look away, look away/ You can turn the page/ … Take away, take away/ This house of mirrors/ Give away, give away/ All the souvenirs.” The other night, I awoke to a…
Enjoying the Vagaries of Life’s Carnival Ride
The Phase 3 clinical trial investigating an oral suspension formulation of edaravone (MT-1186) in treating amyotrophic lateral sclerosis (ALS) is now fully enrolled, the therapy’s developer, Mitsubishi Tanabe Pharma America, announced. This open-label study (NCT04165824) first opened in…
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…
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…
Use of over-the-counter pain relievers, including acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen and naproxen, significantly reduced the likelihood of developing amyotrophic lateral sclerosis (ALS), likely by working against inflammatory processes, a small meta-analysis reported. Aspirin, however, was not seen to affect…
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 Stentrode, a minimally invasive, fully implanted wireless device that transmits signals from the brain’s motor cortex, can help people with upper limb paralysis control a digital device without using their hands, a study shows. In a first-in-human experience, the device…
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…
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