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…
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
“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…
The klotho protein may have brain-protecting effects in amyotrophic lateral sclerosis (ALS), according to a study in mice that may become a basis for developing new therapies. The study, “Klotho Is Neuroprotective in the Superoxide Dismutase (SOD1G93A) Mouse Model of ALS,” was published in the Journal…
A new patient-reported way of measuring shortness of breath in amyotrophic lateral sclerosis (ALS), called the Dyspnea-ALS-Scale or DALS-15, can help doctors identify people who would benefit from noninvasive ventilation, even when their lung function and blood gas tests do not indicate it. DALS-15 also can be…
Differences in how efficiently nerve cells degrade and discard proteins may explain why some motor neurons better resist a buildup of toxic proteins than do others in people with amyotrophic lateral sclerosis (ALS), according to a study in mice. The study, “Stem cell-derived cranial and spinal motor…
People who have a high body mass index or gain weight as they age may be at a lower risk of amyotrophic lateral sclerosis (ALS), according to a large population study done in Norway. Those who were obese or got heavier through time had a more than 30 percent…
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…
Recent Posts
- ‘Early birds’ have significantly lower ALS risk than ‘night owls’: Study
- As my late husband’s ALS progressed, we kept our bucket list simple
- Tossing and turning over fears this ALS journey has come to its end
- Experimental ALS therapy QRL-201 shows potential to slow disease decline
- Worried about an inability to multitask? Here’s what helped me.