“Baby steps.”  That was the advice imparted to Bob Wiley by his psychiatrist, Dr. Leo Marvin, in the movie “What About Bob?“ Wiley, portrayed by Bill Murray, has a perfect storm of maladies including perhaps bacillophobia…

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…

After our second child was born — back when my husband, Todd, had an undiagnosed weak left arm — we purchased a used minivan. We found the van on Craigslist and drove two hours to purchase it. Six months later, Todd was diagnosed with ALS. We made plans to…

QurAlis Corporation has licensed preclinical small molecule compounds — designed to treat amyotrophic lateral sclerosis (ALS) — from Eli Lilly and Company, furthering QurAlis’s specialization in ALS treatment development. The investigational molecules are aimed at specifically counteracting a pathological symptom of ALS called excitotoxicity, a process…

Barriers need to be overcome in order to facilitate community engagement programs for people with motor neurone disease (MND), a group of diseases that includes amyotrophic lateral sclerosis (ALS), a new study shows. The study, “Supporting access to activities to enhance well‐being and reduce social…

Nine months after my husband, Todd, was diagnosed with ALS, he entered a social media contest with a $100,000 grand prize to use to fulfill a dream. Contestants with the most votes advanced to the next round. Todd’s dream was to build a handicapped-accessible home near my parents. The home…

Weight loss at the time of diagnosis appears common among people with amyotrophic lateral sclerosis (ALS), regardless of whether they have dysphagia or other bulbar-onset symptoms, a study looking at more than 2,400 patients found. A severe degree of weight loss is associated with a higher risk of death, its…

I found a walking buddy, and he’s teaching me how to live with my husband’s ALS. When my gym closed, I turned to cross-country skiing every day. When the snow melted, I took up Nordic walking around our fields. One day, returning from my walk, I went to check…

Three Canadian provinces — Ontario, New Brunswick, and Alberta — have added Radicava (edaravone), a treatment for with amyotrophic lateral sclerosis (ALS), to their provincial medication plans. These recent but separate actions mean that Mitsubishi Tanabe Pharma’s intravenous infusion therapy is now listed on each province’s individual public…

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…