I think by now if you are living in or around Boston you have heard of the #IceBucketChallenge to #StrikeoutALS. The Ice Bucket Challenge was created to raise awareness for support of ALS and more specifically Pete Frates. Pete is a former Boston College baseball captain who is battling the disease. If you are nominated to complete the challenge, you must film yourself pouring a bucket of ice water on your head, after nominating others to complete the challenge within 24 hours. By now you have probably seen Pro Athletes, friends, family, and even politicians completing this challenge.
While watching Pete Frates’ video on his site, I learned what rewriting the end of ALS meant to him. “Rewriting the end of ALS means raising money to get better research for treatment and ultimately finding a cure.” So if you head over to karmadata, we can dig into the research part of ALS. You are able to see below that the number of Industry Sponsored ALS trials are declining. As Pete said, the way to a cure is through research. We need to raise the amount of research that is being done.
If you head over to Sponsor Finder and search for ALS Trials, you will see that there are only 8 companies actively conducting ALS clinical trials.
Lastly, this data card below shows government funding. John Hopkins University being the top organization who grants money to ALS.
So what does all this mean? This challenge is to create awareness for ALS and I believe it is working. When I log in to facebook, it’s the first thing I see and it fills my news feed from top to bottom. By creating awareness, we are able to become more knowledgable on ALS and more likely to donate to the cause, which will hopefully result in more research. With all of the visualizations on funding and number of companies/trials, you can see that ALS may not be something people are too aware of. The Challenge will definitely not cure anything right away, but it is a big step in the right direction!
A couple of us here at karmadata have already donated to ALS and completed the Ice Bucket Challenge, even our CEO Sean Power who completed it last night! We urge you to visit petefrates.com and donate! You can also check out the sweet Frate Train gear at petefrates.storenvy.com
A buddy of mine asked “what would be a ‘good’ number of trials and companies?” That’s hard to say, but you can look at something like Type 2 Diabetes for a point of reference: http://www.karmadata.com/card?cardId=4502250FB3BD43C4AF9A1FCCEA2AC0CB In 2013, there were 177 Type 2 Diabetes trials launched by industry as opposed to only 4 for ALS. Also troubling that Glaxo and Eisai are the only “big pharma” with active trials in ALS. Can’t find a cure without clinical trials! Step up your game, industry!