As many as 30,000 Americans have ALS, and there is only one drug available to treat them. And it only modestly extends survival. If ever there was a scenario crying out for research bucks, surely, this is it.
Since 1985, the ALS Association has been spearheading the search for cures, along with raising awareness and supporting quality-of-life initiatives for ALS sufferers. The disease, which is also known as Lou Gehrig’s disease, is in many ways like a more severe form of Parkinson’s. It leads to nerve problems and lack of muscle control, same as Parkinson’s, but, unlike Parkinson’s, ALS is usually fatal within two to five years of diagnosis.
ALS is Bad news. But as with a lot of relatively uncommon disorders like rare cancers and brain tumors, there isn’t a lot of big-name research money floating around to address the need. So it’s up to independent charity-based organizations to organize and coordinate grant-backed research.
Just this week, the ALS Association announced nearly $3.5 million in new research grants, flying to researchers all around the country and world. Its grants are modest—in 2013, most of its over 100 domestic grants were under $50,000—but broadly distributed.
Unlike a lot of foundations, the ALS Association moves its funding affiliations around a lot—it doesn’t just support the same outfits year after year. Perusing the list of grantees, only a few big names—Brown, Johns Hopkins, the University of California system—jump out as repeat grantees from last year.
For what it’s about and how it’s structured, the ALS Association is doing a bang-up job. It’s super-transparent, which is always nice. It gives a wide variety of different awards, including both investigator-initiated awards (your typical grant proposal-style awards) and awards to support research it initiates itself. As in, “Hey scientist, you seem pretty smart, how about characterizing the contributions of epigenetic changes in c9FTD/ALS? We’ll pay you to do it.”
Actually, that research is part of this most recent batch of awardees, and it was initiated by the researcher (Veronique Belzil, Ph.D., Mayo Clinic, Jacksonville, Florida), not by the ALS Association. But we’re intrigued by the organization’s two-way street approach to funding research. And we have reason to believe the ALS Association may be gearing up for a more auspicious future of giving. Stay tuned for that.