The ALS Ice Bucket Challenge has dominated everyone’s Facebook news feeds for weeks. There’s no arguing with its success, the ALS Association (ALSA) has raised $100 million and counting. It’s a brilliant fund raising idea — friends challenge friends to do something fun and ridiculous. Many people have been interested in learning more about ALS as the ice bucket challenge continues to circulate; “what is ALS” has been one of the top searches on Google for weeks. The ice bucket challenge is fun, has generated a lot of interest and research and has raised money. You can’t argue with that; haters gonna hate. 

President and CEO of ALSA Barbara Newhouse told the Boston Globe the nonprofit group is “absolutely committed to transparency” and will invest “wisely in areas that will have maximum impact on the fight against this devastating disease.” The ALSA provides grants to researchers. In fact, most high-risk, high-gain projects are funded by private organizations like the ALSA rather than the government. 

The success of the ice bucket challenge has generated a lot of debate among researchers. Forbes writer Dan Diamond wrote, “… the Ice Bucket Challenge (may be) taking away donations from other causes. Michael Hiltzik of the L.A. Times wonders if the funds could be better spent on a disease that affects more people.” It’s true that the increase of donations to ALSA may mean less money for other organizations, but to say that ALSA should have less money than other organizations researching more prevalent diseases is asinine. ALS is a scary neurodegenerative disease with a prognosis of two to five years. Just because it is less prevalent does not mean that ALSA should get cut. I would ask Hiltzik if he would hold that same opinion if he or a loved one was diagnosed with ALS.

To say that this money is going to research, though, is something that needs to be clarified. That could mean funds are going back to trying the same things that haven’t worked, it could mean going to research that’s not supported by most medical professionals or it could mean offering grants for a wide variety. What we do know is that apparently this money could not have come at a better time. Kevin Eggan, a faculty member at the Harvard Stem Cell Institute, published findings earlier this summer that suggest certain therapeutics could help lengthen the lifespan of ALS patients. Neurologists at the University of Massachusetts Medical School have reported recent discoveries of more than 35 gene mutations linked to ALS and have developed new therapies to target those mutations. Most current research regarding ALS has been focused on genetics, but there is some going to stem cell research. It has been proven in animal subjects that stem cell transplantation slows the progress of the disease. Many patients have received this treatment and have had no adverse effects. So, the current research is in the controversial field of stem cells and in something that is not a cure but slows down the disease. A few pro-life organizations, particularly connected to the Catholic church, have been trying to direct people away from donating to the ALSA. Whether you are pro-life or pro-choice, destroying an embryo for something that is not a cure seems sketchy. 

As the ALSA decides where to use its $100 million, I urge the general public to know where their donations are going, and I hope to see some of it go toward caring for current patients with ALS and their families. For the large portion of that money going to research, hopefully there will continue to be more discoveries in genetics. Stem cell research should be a last resort at best, especially since it cannot cure this disease. There is a danger of treating the ALS Ice Bucket Challenge as a fad where many people will forget about ALS in general. It is not a fad; it is a scary reality for many people. There needs to be continual research funding, but that research needs to be supported universally by medical proofs. Thankfully, the ALSA is a reputable organization that intends to be open about its budget. Dumping ice water on your head and putting it on Facebook may be a fad, but ALS is not. Treat the topic respectfully and continue to pay attention.