I’m not the same person I was 10 years ago, before my husband, Todd, was diagnosed with ALS. The brutal reality of the disease has changed me in three ways: 1. I swear more I’d never done much swearing. When I was 15, I had just gotten my driver’s permit…
3 Ways ALS Has Changed Me
The biotechnological company INmune Bio has been awarded a $500,000 grant from the ALS Association to further develop a therapy that might reprogram the innate immune system in people with amyotrophic lateral sclerosis…
PrimeC, a new combination treatment by NeuroSense Therapeutics to slow down or halt the progression of amyotrophic lateral sclerosis (ALS), has received orphan drug status from the U.S. Food and Drug Administration (FDA), and is being investigated in two recently-initiated clinical trials. The decision to…
The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. Yet even with its enormous resources, the FDA these days relies more and more on patients to…
Columns
Hooray! You Can Hear Me Now!
Sometimes you get lucky and life gives you a break, which is not always the norm for someone living with ALS. The past two weeks have been rather fun for me, thanks to a suggestion that I begin using a portable microphone. I have written about my challenges…
A new spinal cell delivery method may reduce the risks and boost the effectiveness of stem cell therapy designed to regenerate the nervous system in neurodegenerative diseases such as amyotrophic lateral sclerosis (ALS), an early study in rats has found. The study, “Spinal parenchymal occupation by…
Much work is ongoing in amyotrophic lateral sclerosis (ALS), as researchers look for better ways of treating people with a disease that progressively cripples and kills motor neurons — and possibly finding a first therapy addressing the root cause of ALS rather than its symptoms. “ALS is always…
The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business last month — just over two years after the European Union decided to relocate the EMA to the Netherlands in the wake of Brexit.
A month after my husband, Todd, was diagnosed with ALS, I wrote in my journal: “Squeezing in memories is bittersweet. Last weekend, we took Sara and Isaac to the beach. The sun sparkled off the water and Isaac pointed at the seagulls flying over Lake Michigan. I took pictures…
A new tool to search for medicines that might treat neurodegenerative diseases linked to problems with mitochondria, including amyotrophic lateral sclerosis (ALS), has been developed by a team of scientists at the Scripps Research Institute, a study reports. This tool…
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