Power wheelchairs are expensive, and while Medicare covers the base cost, many beneficial features are an additional out-of-pocket expense for those already facing the high cost of living with ALS in the United States. Nine years ago, we began the process of ordering a power wheelchair for…
“Oh shoot, I just dropped my coffee. There goes my favorite mug! It was a gift for Father’s Day…” Juan shares his early days with ALS, his 2-year journey to diagnosis, and how he found the strength to move forward.
Treating patients with their own immune regulatory T-cells (Tregs), in combination with IL-2 — a protein that boosts the cells’ immunosuppressive function and survival — is generally safe and shows potential to slow disease progression in people with amyotrophic lateral sclerosis (ALS). That’s according to a small Phase…
The cerebrospinal fluid of people with sporadic amyotrophic lateral sclerosis (sALS), but not of those with familial forms of the disease, promoted ALS-specific molecular, cellular, and motor abnormalities in healthy mice, a study showed. Apolipoprotein B-100 (apoB100), a protein involved in cholesterol transport, was identified as the main…
I’ve been living with ALS for 12 years now, and it’s certainly taught me many lessons. They’ve involved having patience and perseverance, as well as getting back up over and over. The most important lesson, however, has been to let the present moment be what it is, instead of…
Altered forms of the SOD1 protein are found in the spinal cord nerve cells of people with all types of amyotrophic lateral sclerosis (ALS), not just those with mutations in the gene providing instructions for making the protein, a study reported. “The results suggest this abnormal protein contributes to cell…
The European Medicines Agency (EMA) has agreed to review an application seeking the conditional approval of AB Science’s masitinib, now Alsitek, for the treatment of amyotrophic lateral sclerosis (ALS). Conditional approval is granted to a medication whose immediate availability fulfills an unmet medical need, when its preliminary benefits are…
Treatment with gene therapy candidate SynCav1 delayed disease onset and extended survival in a mouse model of amyotrophic lateral sclerosis (ALS), according to a new study. The experimental therapy aims to improve the survival of motor neurons in people with ALS irrespective of the underlying cause. “These data suggest that…
If you asked my late husband, Jeff, what he’d lost while living with ALS, he might have told you via text-to-speech technology that he missed his voice. His dry wit, irreverence, and affinity for gentle teasing relied, in some part, on his ability to speak. Or he might…
“Are you ever going to go faster, Mom?” my 12-year-old son, Isaac, asked earlier this summer when I caught up to him at the bottom of a hill, where he was waiting for me. I enjoy mountain biking with him. At times I ease off the brakes on a smooth…
