Unless you’ve been living under a rock for the past month, you’ve probably heard about the ALS #icebucketchallenge: dump a bucket of ice water over you or donate money to the ALS Association (many people have voluntarily done both). While I am all about raising awareness for worthwhile and important causes, and I love love love the heart behind this fun and silly viral craze, my fear is that it’s a bit of a slacktivisim trend. Yes, I absolutely think it is fantastic that (as of August 21), the ALS Association has raised more than $41 million dollars because of this. But, how many people that have taken a few minutes to learn anything about ALS or the organization they are supporting? It’s a truly devastating disease and one that is worthy of its current time in the spotlight; however, there are bigger issues than just the ALS itself to consider. To be clear, my intent for this is not bashing the #icebucketchallenge, but just to bring some other thoughts to the table.
What is ALS?
ALS is an acronym for amyotrophic lateral sclerosis. In today’s world, it is also synonymously Lou Gehrig’s Disease after the disease ended the career of baseball legend Lou Gehrig when he was diagnosed in 1939. The disease was first discovered 70 years earlier, in 1869, by Jean-Martin Charcot, a French neurologist.
ALS is a “a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.” In more layman’s term’s: ALS is a disease that, over time, causes the cells in the central nervous system (consisting of the brain and spinal cord) to break down and die. These neurons go from the central nervous system to the muscles throughout the body. The results in the muscles in a state of atrophy or that they are wasting away. The patient loses muscle control and, in time, this may result in complete paralyzation. Related complications to the disease include dementia and difficulty breathing, eating, and speaking.
There are approximately 12,000 cases of ALS in the United States, and while there is some hereditary risk (5-10%), there are no clear risk factors, although it is most commonly diagnosed in patients between the ages of 40 and 60. Once symptoms begin to arise, the prognosis is 2-5 years; however, about 10% of patients live at ten or more years. Approved by the FDA in 1995, riluzole can extend the lifespan of a patient by a few months. Currently, there is no cure for ALS.
Do you know where your donation is going?
I have a master’s degree in nonprofit management and I work for a nonprofit, so I am 100% on board with donating to these amazing organizations. However, what frustrates me is when people donate without looking into the organization. To be fair, I have been as guilty as this as the next person because it’s easy to get caught up in wanting to support a something you believe in.
When you’re considering donating, there are some questions to consider. Is the organization registered as a 501(c)(3) nonprofit with the IRS? As for the monies raised with any fundraising efforts, what will the money do? In other words, what is the organization’s mission? In the case of the #icebucketchallenge and The ALS Association,
The mission includes providing care services to assist people with ALS and their families through a network of chapters working in communities across the nation and a global research program focused on the discovery of treatments and eventually a cure for the disease. In addition, The Association’s public policy efforts empower people to advance public policies in our nation’s Capital that respond to the needs of people with ALS.
How transparent is the organization? What results are they getting with their programs and services? How much of the organizations budget is actually going to the mission (the programs and services) and how much to overhead costs? A good rule of thumb is that 75% of the budget should be going towards programs and services. Charity Navigator is a great resource for some baseline research into nonprofit organizations, and they rank The ALS Association very favorably.
What about research funding?
On a larger scale, research funding is being cut across the board. This impacts researchers working to find a cure for diseases like ALS, but also cancer, Parkinson’s, heart disease, and so much more. With a 2014 budget of $30.15 billion, the National Institutes of Health has what sounds like a lot of money to work with. But these research trials are not cheap, especially for these major issues. As such, the NIH is able to fund only one in six research proposals, per the organization’s Director in a recent interview with USA Today. Combining inflation with a decreased budget, “the NIH budget has lost 25% of its purchasing power in the last decade” (5). Supporting The ALS Association is fantastic, but to find a cure, we need research funding which is going to come from our elected officials. Empower yourself to contact your representatives and ask they would support increases in NIH funding. In this election year, take the time to research your candidates and support those who will work to bring change in this area. Research for these diseases will not succeed without the federal funding to support it, and without the research, there will be no cures.
What about the water?
Finally, while I think ALS is a very worthwhile cause, I would urge people to also consider donating to a cause related to water such as 20 Liters or charity: water because while we’re dumping buckets of perfectly good water over our heads, the state of California is currently experience a drought and almost 800 million people around the world don’t have access to clean water. For perspective, that’s 21 times the population of California. So yes, we’re raising awareness about ALS, but at what expense to those around the world?
Ultimately, before jumping onboard the bandwagon of the #icebucketchallenge (or any similar trend), I encourage you to take a few minutes to really look into what it’s all about.
Sources: (1) The ALS Association, (2) Mayo Clinic, (3) National Institute of Neurological Disorders and Stroke, (4) ALS Therapy Institute, (5) USA Today