Faced with Incurable Disease, Fighting Is Winning

I am by nature a fixer. After my husband, Todd, was diagnosed with ALS, I found out modern medicine didn’t provide a cure. There’s no option for surgery. No drugs significantly improve outcomes. So, I turned to searching the internet for alternative therapies that might help. “I want to fight…

Men with benign prostatic hyperplasia (BPH) — prostate gland enlargement — are not at greater risk of amyotrophic lateral sclerosis (ALS) and similar disorders, according to a nationwide study in Denmark. “We found no evidence of an increased risk of ALS and other MND [motor neuron diseases] among…

The challenges Vesna Aleksovska faced when she decided a decade ago to help fellow Macedonians with rare diseases were so daunting, they would have scared off all but the most determined. At that time, few doctors in the developing country of 2 million — now called North Macedonia — had…

“For the past two weeks, you have been reading about a bad break. Yet today, I consider myself the luckiest man on the face of the earth.” —Lou Gehrig, July 4, 1939 Lou Gehrig was my father’s favorite baseball player, which for a fair bit of my youth,…

Masitinib in combination with Rilutek (riluzole) slows functional decline of patients with amyotrophic lateral sclerosis (ALS) who have a typical disease progression, according to the final report of AB Science‘s Phase 2/3 clinical trial. At 11 months of treatment with…

Posture impairments in amyotrophic lateral sclerosis (ALS) are linked to deficits in trunk control and in the mechanisms that control the body’s response to surface tilts. Moreover, these abnormalities also correlated to disease severity. Those findings are in the study “Abnormal trunk control determines postural abnormalities in Amyotrophic…

Researchers identified small-molecule compounds that help to prevent the build-up of stress-induced clumps of TDP-43 protein, a hallmark of amyotrophic lateral sclerosis (ALS). These findings, although preliminary, may lead to new therapies for ALS. The work “Small-Molecule Modulation of TDP-43 Recruitment to Stress Granules Prevents Persistent TDP-43 Accumulation in…

It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in their native North Macedonia diagnosed his kidney, vision, and hearing problems as Alport syndrome. Although she had known for years that something was wrong, the news that David would battle a lifelong rare disease devastated…

“You’re traveling through another dimension, a dimension not only of sight and sound but of mind. … That’s the signpost up ahead — your next stop, the Twilight Zone!” —Rod Serling I took my eyes off the figurative road and missed the signpost entirely. It began one…

Summer is finally here, which means it’s time for outdoor events, fun trips, and visits from family and friends. I look forward to each and every one of these memory-filled activities, especially now that I live with ALS. But even just a few days of travel or entertaining, combined…