The #ALSIceBucketChallenge has been nothing short of a miracle for patients and researchers. Internet memes are rather capricious, having a nearly random hit/miss ratio. That this became so huge is a stroke of incredible luck. The awareness, and resulting increase in donations, has been a huge windfall. This surge couldn’t have come at a better time as researchers now have exquisite investigational tools not available even 5 years ago.
There is then the begged question, “Why did it take a patient and a tractor trailer full of luck to bring awareness to the public?” For decades there have been organizations claiming to represent ALS patients. Yet never has there been a sustained national awareness project executed. Patients were left largely on their own to create awareness. This is a question to which we as patients should demand an answer.
Nevertheless, the windfall is upon us. I believe that this boost in funding should be used to create a critical mass of awareness and outreach. As stated, Internet memes are capricious and subject to fading from the public memory with all the speed and ferocity with which it entered. This is the perfect time to keep the message sustained in the public view. Certainly the money to do so is now available.
Another question the ALS patient community should be asking is how much of the massively increased donations are going to be actually used for research, and in what programs. Some donations are going directly to research facilities but the bulk of them are not. Is that bulk to be hoarded and doled out in tiny slices and without focus to a wide variety of basic research projects, never giving any sufficient amounts to fully complete the work? Or will a significant effort be launched which will fund focused work on high-value pathways, including helping fund clinical trials in humans (there are a few promising treatments languishing for lack of funding to pay clinics to conduct Phase 2-3 trials).
This is the time for organizations representing the ALS patient community to step up. The shelf-life of popular public awareness is notoriously short. We need to take this opportunity to create a program of sustained awareness and lobbying for research funding, along with a focused research effort encompassing basic research through to human trials. It is also the time for all research and advocacy organizations to come together as a united front in order to make ALS nothing more than an unpleasant memory.