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…
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…
Welcome to Kristin Neva’s “Joyful Sorrow,” a new ALS News Today column. *** My world changed forever 13 years ago when I became a mom. I lay in the hospital bed with my newborn daughter’s crib next to me and my husband sitting nearby. I was in so…
Nanoparticles may help enhance the therapeutic potential of otherwise difficult-to-deliver agents, such as curcumin, in diseases affecting the central nervous system, including amyotrophic lateral sclerosis (ALS), a review study shows. The review, “Curcumin-loaded nanoparticles: a novel therapeutic strategy in treatment of central nervous system disorders,” was published in the…
I recently reemerged from a plummet into the dark depths of my psyche. An eight-day hospital stay triggered my dive into an emotional abyss. About 2 1/2 weeks ago, a piece of chicken stubbornly lodged itself in my esophagus. After waiting 24 painful hours, in the hope of uneventful digestive…
A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials of the National Organization for Rare Disorders (NORD) presented the awards during a June 22 dinner attended by…
Multidisciplinary care with timely use of respiratory and feeding support contributes to increased survival for people with amyotrophic lateral sclerosis (ALS), a single-center study in Spain finds. The study, “Survival benefit of multidisciplinary care in amyotrophic lateral sclerosis in Spain:…
Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…
