Dosing of healthy volunteers has been completed in a Phase 1 clinical trial evaluating Neos Therapeutics‘ experimental therapy NT0502 for chronic sialorrhea (excessive drooling), a common problem in people with amyotrophic lateral sclerosis (ALS). The open-label study includes 30 healthy adults who were assigned randomly to take one of…

Like many families, we played games over the holidays. Because my husband, Todd, is completely paralyzed due to ALS, we chose games in which he could participate. Apples to Apples worked well for him. I set his cards in the game’s box top, and he told me which card to…

For its promising investigational therapeutic approach to neurodegenerative diseases such as amyotrophic lateral sclerosis (ALS), BrainStorm Cell Therapeutics is the Buzz of BIO 2020 winner in the Public Therapeutic Biotech category. The Buzz of BIO contest identifies U.S. companies with groundbreaking, early-stage potential…

I tell potential customers that my Christmas wreaths will last until Easter. That usually gets a chuckle and often a sale. At a holiday craft fair, a gray-haired man topped my claim: “I bought one from you last year, and I just threw it out last week.” Longevity is an…

Mitsubishi Tanabe Pharma America (MTPA) and Soleo Health have entered into an agreement that will facilitate Soleo sharing real-world data about the use of MTPA’s Radicava (edaravone) in amyotrophic lateral sclerosis (ALS) patients. Radicava was approved for the treatment of ALS by the…

If my husband, Todd, did not have ALS, there would still be someone else with ALS. And there’s cancer. Childhood illness. Tragic accidents. But winter has arrived on the Keweenaw Peninsula, and I’m compelled to get out and delight in God’s creation. Would He have made nature so beautiful…

With so much recent publicity surrounding gene therapy, it’s no surprise that the topic was a major focus of the recent 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit. From diagnosis and clinical trial design to manufacturing, pricing strategies, and ethical concerns, gene therapy — both its high…

Treatment with oral reldesemtiv appears to slow the deterioration of function — including breathing capacity and muscle strength — in amyotrophic lateral sclerosis (ALS) patients, regardless of whether or not they were taking additional medications such as Radicava (edaravone) or Rilutek (riluzole), a new…

With a $100,000 grant, the FTD Disorders Registry has received a boost from CurePSP, a nonprofit organization working to enhance awareness, education and care for prime-of-life neurodegenerative diseases. Launched in 2017 by the Association for Frontotemporal Degeneration (AFTD) and the Bluefield Project to Cure FTD — with…

As I approached the one-year anniversary of my husband, Todd’s, ALS diagnosis, I wrote in my journal: “I want to be happy, healed, and whole again. But the grief that I am experiencing is not something one can easily get over.” I read books such as “Getting…