Next week I'm getting bucketed...again. #ceosoak In the 10 years since the Ice Bucket Challenge we've seen a huge leap forward in what we know about the disease. New genes like NEK1, TBK1 and KIF5A are leading us towards better diagnosis and targeted therapies, advances in biomarkers like NfL (Neurofilament light chain) are helping us decrease the time to diagnosis and, with 100+ drugs in some phase of active clinical trials, we are closer than ever to the end of ALS. So with all that great progress why still do this? Well, for all that progress there is still lots we don't know about ALS. While we know that genetic mutations and environmental factors contribute to ALS, the how and why are still unknown, and for the other 90% of cases which make up sporadic ALS we have no idea at all. We don't understand the mechanisms of the disease nor what are the indicators that someone will, or won't, get it. So...I'm getting under the bucket again, and I'm asking you all to support me (or anyone for that matter) by making a donation to the cause, finding an event or walk around you and participating in that, or starting your own fundraising effort. Whatever you choose to do...just do something! Later, #LetsSeeItEnd
And I’ll be there to watch and video!
Co-Founder of the "No More Excuses" ALS Advocacy Group, and @ALS_NOW
1moIt's time for ALSA to accept that what happened 10 years ago was a once in a lifetime event. It seems like the millions of amazing people who dumped water on their heads in 2014 actually expected hard results by 2024, including funding at least one new FDA approved drug for patients. Instead, many know ALSA has now had a divisive lawsuit, spends $30M+ a year on payroll, and just posted a $20M+ loss. Sounds like the trusting public just aren't buying it this time. Not to mention the 2014 money was never all spent. Bad call. So honestly, can we in ALS blame them? "Fool me once..." .