The Power of Puns

“Hurry! I’m having a pee-flex,” my husband said as I put on disposable gloves. I grabbed the urinal and held it for him. Todd invented the word pee-flex to describe the sudden urge to go once he drives his wheelchair into the bathroom. He is paralyzed from ALS, so…

Certain blood biomarkers of lipid, or fat, metabolism — typically measured to determine a person’s risk of cardiovascular disease — appear to protect against developing amyotrophic lateral sclerosis (ALS), a study of more than 500,000 adults reported. Specifically, researchers found that people with higher levels of high density lipoprotein (HDL)…

“As I was walking down the street one dark and dreary day, I came upon a billboard, much to my dismay. The billboard was all tattered from the storm the night before. The wind and rain had done their work, and this is what it bore: ‘Drink Coca-Cola cigarettes, smoke…

Total job- and leisure-related physical activity over a lifetime is not a risk factor for amyotrophic lateral sclerosis (ALS), but heavy physical activity on the job is associated with a nearly two-times greater risk of ALS, a study in Germany shows. Also, ALS patients reporting pre-diagnosis and current moderate…

Last week for me, the letters A-L-S stood for “A Lot of Socks.” I tackled a project that would make living with amyotrophic lateral sclerosis easier for me right now, for my future self, gave me peace of mind, and yes, it involved socks. It all began when I was…

Using a new laboratory model of brain cells, researchers demonstrated that cells with mutations associated with amyotrophic lateral sclerosis (ALS) show early signs of DNA damage and other forms of cellular stress. Results suggest that blocking these cellular stress processes may hold promise in treating ALS. The study, “…

A Phase 2 study of the investigational antibody AT-1501 in treating amyotrophic lateral sclerosis (ALS) has completed patient enrollment in three of its four dosing groups, and is likely to be fully enrolled by year’s end, its developer, Eledon Pharmaceuticals, announced. A total of 54 ALS patients diagnosed in the…

New early clinical study results support the potential of GN-K01, an investigational antibody being developed by GeNeuro, as a treatment for amyotrophic lateral sclerosis (ALS). The therapy may enter clinical trials as early as 2022, according to the company. The antibody targets a viral protein, called HERV-K ENV,…

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…

Eighteen years ago, Todd and I joined our lives in marriage, vowing for better or worse, in sickness and in health, and we went forward together as friends and allies. Jesus taught that joining in marriage is “two becoming one flesh.” Indeed, I felt oneness with Todd. We liked…