Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…
Two U.K. organizations, the Motor Neurone Disease (MND) Association and Nick Smith Foundation, are partnering on a pilot project to help youngsters affected by motor neurone disease (MND) create memories of their family member or friend. The initiative is being tested in four cities in England: Milton Keynes, Manchester,…
BrainStorm Cell Therapeutics’ cell-based therapy NurOwn increases the number of immunosuppressive cells and lessens inflammation, according to a small preclinical study. These immunoregulatory effects, along with NurOwn’s neuroprotective and neuroreparative properties, may be key to halt the progression of amyotrophic lateral sclerosis (ALS) and other neuroinflammatory diseases, including…
“That’s the one project I wish I could have finished,” my husband, Todd, said while looking out a window at Comet’s doghouse. He had expressed similar sentiment on other occasions over the last few years. After Todd was diagnosed with ALS, we sold our house in southeastern Wisconsin and built…
The nonprofit group I AM ALS has opened a global resource to help keep amyotrophic lateral sclerosis (ALS) patients and their caregivers fully aware of clinical research underway. Called ALS Signal: Clinical Research Dashboard and created by patients, caregivers, and advocates, the dashboard offers a user-friendly way to learn about…
Last week, I ended this column with a tongue-in-cheek inference that in deference to an improbable ALS curse befalling me, I would not share two near-disaster experiences anytime soon. This week, I am reneging on that prediction with the following disclaimer:…
The ALS Association has awarded $470,000 in scholarships to 94 students in the U.S. whose lives have been financially affected by amyotrophic lateral sclerosis (ALS). Each scholarship recipient receives $5,000 annually through the organization’s Jane Calmes ALS Scholarship Fund to help cover education costs. Awardees for the…
What a long, crazy summer it’s been, as we’re living with minimal social interaction and long periods of isolation. Parts of our lives have changed without our consent, and we have to be on the lookout for developing symptoms. And those are just the challenges of living with ALS…
Inhibiting the receptor for advanced glycation end products (RAGE) protein lessens the symptoms of amyotrophic lateral sclerosis (ALS), according to a study in mice. However, a full deletion of the RAGE gene shortens the lifespan of mice, highlighting the complex role of this protein in the context of neurodegeneration.
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…
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