Helping people understand what living with ALS is really like

I enjoy reading motivational blogs written by people from all walks of life outside the ALS community. What they write not only inspires me, but also gives me lots of new ideas. However, one recent blog post had me fuming. The author described how she was transforming her life…

To help those who have lost their ability to speak easily, Georgia Southern University’s RiteCare Center for Communications Disorders again is recruiting students, faculty, and staff members to make recordings for submission to a voice bank. The center’s third annual Voice Drive, which runs through May 2, is…

Kadimastem is planning a Phase 2a clinical trial to test if repeat dosing of AstroRx, its investigational therapy for amyotrophic lateral sclerosis (ALS), can continuously delay the disease’s progression. The study will investigate every three-month dosing after findings from an earlier Phase 1/2 trial (NCT03482050) showed a…

Today I had a mammogram. We have a family history of certain cancers, so I’m careful to get recommended screenings. After losing my husband, Jeff, to ALS, I feel a bittersweet commitment to taking care of myself as he would want. Looking after my health after he’s gone,…

Kadimastem’s experimental cell-based therapy AstroRx was safe and significantly slowed disease progression in the first three months among people with amyotrophic lateral sclerosis (ALS), a Phase 1/2 clinical study shows. The findings are in line with initial data released by the company in 2020, with AstroRx more…

Thinking of gift ideas for my husband, Todd, has always been a challenge — especially since he’s been paralyzed by ALS. Some of my gifts to him haven’t gotten much use, like a heated jacket that he found too hot. He used it a couple times when we went…

Early activation of certain cellular stress response pathways may help prevent the death of motor neurons in amyotrophic lateral sclerosis (ALS) patients with FUS mutations, according to a recent study. In particular, heat shock response (HSR) pathways and the integrated stress response (ISR) were increased in patient-derived motor neurons…

The gene expression profiles of motor neurons — the specialized nerve cells that control movement and are lost in amyotrophic lateral sclerosis (ALS) — vary among men and women, with substantial differences found between the sexes in a new study done using induced pluripotent stem cells, or iPSCs. “The…

Is anyone else feeling winter-bluesy-cabin-feverish? I know I am. I’ve been feeling that way for the past couple days. It always happens to me at this time of year, and because I live with ALS, it’s especially challenging. I blame my off-kilter mood on February, with its dark mornings…

A team of U.S. researchers have identified two proteins in the lab — PIKFYVE and SYF2 — that may each be a useful therapeutic target for treating amyotrophic lateral sclerosis (ALS). Their findings on these potential molecular targets were published in a pair of studies earlier this month. “Our…