Let's Talk About What Really Matters: Who's Getting All New Money Raised for ALS?

Looking back on the year the ALS Association has had, I can’t help thinking of the children’s story where a demure mouse hosts a party in its quaint little cottage—and a pack of wild raving elephants show up.

Last year, the ALS Association was, well, how do I say this? Shoestring. Trying to do research, and advocacy,and improve quality of life for patients, plus administering to its Certified Centers of Excellence, all on $23.5 million. Was it dreaming of bigger things, or was it content to build its reputation and impact slow and steady? We can’t say. But regardless, those days are long over.

In just 30 days, from July 29 to August 29, the Ice Bucket Challenge brought in $100.9 million. The same period from last year? A mere $2.8 million.

Related: It's Not Just the "Ice Bucket Challenge" Pumping Up this Outfit

More money can lead, as they say, to more problems. But after such a barnstormer ice bucket season, the ALS Association seems to be taking it slow. It might’ve been tempting to go out, lottery-style, and throw wads of cash into daring new research trials, say. But these guys aren’t blowing their cash on a fancy yacht, here. Their operating budget for 2014 certainly reflects this fortunate influx of money, but it’s prudent, too.

The Board of Trustees has approved $21.7 million in funding, most of it going to research. That’s big, because in 2013, the ALS Association put only $7.2 million, or 28 percent of its budget into research. This announcement—and we’re expecting there will be others—seems to indicate the ALS Association’s desire to make research a bigger part of their pie, moving forward. That’s good news for anyone stuck in a gridlock of trying to get funding for trials.

Let’s take a look at the four main research grantees, shall we?

ALS Accelerated Therapeutics (ALS ACT). Joined by a $10 million pledge from the ALS Finding a Cure Foundation, the ALS Association has contributed $10 million to this innovative treatment acceleration program. It’s an academic-industry partnership, it says, but other than having an investigator from General Electric on the team, we don’t see the connection. Regardless, its goal is to expedite clinical trials by creating new neuroimaging tools, identifying and eliminating misfolded proteins within motor neurons, and supporting pilot clinical trials and a challenge grant program to lampoon roadblocks.

New York Genome Center. The ALS Association with match a $2.5 million pledge from the Tow Foundation, to coordinate a scientific team with the goal of understanding the genetic roots of ALS. Recently, it’s seemed that genes may play a bigger role in ALS than previously thought; a cooperative approach is key to gaining purchase in this area.

Neuro Collaborative. Pooling the influence of three California labs focused on ALS, this initiative received $5 million in funding from the ALS Association. It’s going to bring together Cedars-Sinai in Los Angeles, the University of California San Diego and the Gladstone Institutes, an affiliate of the University of California San Francisco to, among other things, develop antisense therapy for the C9orf72 gene and create pluripotent cell lines to share within the ALS community.  

Project MinE. Launched in June of 2013 in the Netherlands, project MinE seeks to sequence the genomes of at least 15,000 people with ALS. The possibility for discovering a wealth of genetic risk factors and protective capacities is high, and the ALS Association is putting up $1 million towards that goal.


The rest of the money, $3.2 million, will be going to boost the ALS Association’s Certified Treatment Centers of Excellence, and to strengthen drug development interaction with the FDA. Many other organizations work to develop guidance for drug companies, guidance that can help them navigate the journey to drug approval—and with only one ALS drug on the market, this area is a good one to beef up.

As we said, we are expecting to see additional announcements of funding pushes from the ALS Association—we presume they aren’t just going to sit on the almost $75 million left over from this summer’s Ice Bucket Challenge.