Signals Blog

If you follow amyotrophic lateral sclerosis (ALS) research, you may be interested to know that ALS Canada is holding a free webinar (registration link enclosed) on February 28 to explain how funds from the ALS #Icebucketchallenge from 2014 were spent.

Do you remember the #Icebucketchallenge? Of course you do! It was a social media campaign that went viral and raised US$115 million for ALS organizations in the United States, with US$77 million dedicated to research. In Canada, $17 million was raised and $11.5 million went to research.

This year, the family of sports journalist Tom Haberstroh launched the #ALSPepperChallenge on behalf of his recently-diagnosed mother. Celebrities, especially in the sporting world, have once again jumped on board. They are hoping to raise US$1,000,000, with donations going to a not-for-profit biotech called the ALS Therapy Development Institute.

ALS is a neurological disorder that attacks motor neurons, or specialized nerve cells, in the brain and spinal cord. This devastating condition robs the body of its ability to move, talk and even breathe. A diagnosis means paralysis and eventually death, typically within five years. There are many groups – here’s a list for California alone – working to treat or cure ALS using stem cells or gene therapies.

As I shared here, BrainStorm Cell Therapeutics has a product in testing to treat ALS. Last year, CCRM was engaged to assist BrainStorm in seeking early regulatory approval from Health Canada to distribute NurOwn® to patients in Canada. Today, BrainStorm is exploring NurOwn as an ALS treatment in a Phase 3 trial (NCT03280056), with studies being conducted at six leading ALS clinical sites in the U.S. BrainStorm began recruiting trial participants in October 2017.

Earlier this year, BrainStorm was granted Good Manufacturing Practice (GMP) certification from the Israel Ministry of Health for its Israeli contract manufacturing facility. This means BrainStorm’s manufacturing site is compliant with Israeli GMPs, so patients outside of the U.S. clinical trials are closer to accessing the product.

ALS is no laughing matter, but the people supporting #ALSPepperChallenge are hoping a little levity with their fundraising appeal will help them attract attention to the cause and reach their goal. So if you’re feeling brave, put your money where your mouth is and eat a hot pepper(s) while making a donation for ALS research. (And please don’t tag me. It was bad enough pouring a bucket of ice water on my head.)


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Stacey Johnson

Stacey Johnson

For almost 20 years, Stacey has been providing strategic communications counsel to government, corporate, technology and health organizations. Prior to that, Stacey was at the CTV Television Network, first as a researcher, then as a story producer for “Goldhawk Fights Back,” a special ombudsman segment that aired weekly on the National News and Canada AM. Before joining CCRM as the Director, Communications and Marketing, Stacey was the Director of Communications for the Canadian Arthritis Network. Stacey is editor of Signals. You can follow Stacey on Twitter @msstaceyerin.