A Testimonial to Fundraising

I recently read a disturbing article by Felix Salmon from Slate that argued against donating to, as he called them, “disease-specific charities.”  This was in response to the “ice bucket challenge” to raise money for ALS.  I have to admit, the idea of pouring a bucket of ice water over your head doesn’t seem to be the best thing to do to raise money.  Especially since it wastes water during this time of drought in California.  Nevertheless, the concept is unique and has made people pay attention to the disease as no one had before.

Mr. Salmon speaks primarily in terms of ALS.  However, his statements have
a broad impact across the disease-disorder spectrum.  In his opinion piece, he promotes the idea that by donating to one of these charities, you are not using your money wisely, especially if you donate only once.  Also, research dollars raised by these organizations are usually not spent effectively, and it requires a “long-term undertaking.”  He also argues that awareness is a useless endeavor, as it “does precious little good to anybody.” 

Let me address each of these issues. 

First, research to find a cure.  It is true that these diseases/disorders are difficult, seemingly impossible to completely conquer.  It is not an impossible task, however.  In epilepsy, we’ve come a long way in treatments.  And although a majority of people with epilepsy are not 100% seizure-free, a good percentage of people have partial control.  This is all thanks to the research dollars put in, raised by individual donations, among other sources.  Every donation, however small, contributes in the search for a cure.

Mr. Salmon states that the money raised “disease-specific” organizations need to be spent wisely, and some do not succeed at that.  This is true to some extent, so it is the individual’s responsibility to donate to the group(s) he/she deems worthy.  That means doing research about the various organizations and evaluating them.  Then, you can make an informed choice as to where to put your money.  However, characterizing all organizations as incapable of fundraising and putting those dollars to effective use does a disservice to the community.

Case in point:  in the west, we have come a long way in treating epilepsy.  No longer do we try to exorcise spirits out of the person’s body, or bleed them.  This is all due to advances in research.  We have the pioneers of the 19^th century, Russell Reynolds, John Hughlings Jackson, and William Richard Gowers, to thank for advancing the knowledge of epilepsy and giving us our modern definition of a seizure: “an occasional, an excessive, and a disorderly discharge of nerve tissue on muscles.”   This plunged us into the modern era of epilepsy treatments.  Our focus now is to build on all the knowledge we have and target those research dollars in various avenues in order to find a cure.

Much more disturbing is Salmon's disdain for awareness.  His argument is that even if you know about a disease, awareness is useless because there will never be a cure. The statement that "there will never be a cure" goes against the idea of doing research for these diseases in the first place.  Why are we fighting?  But even if we didn't have hope for a cure, awareness is necessary.  First, there needs to be a general education among the people who are affected by the disease/disorder.  Only after the community that is affected is educated can a larger awareness campaign be carried out.  This is mandatory.

If we did not have awareness campaigns, people would not know what any of these diseases are in the first place. Without education, people would remain ignorant about our diseases/disorders.  They would not know the signs of or what to do in certain situations, e.g. during an epileptic seizure!  They would create myths to satisfy their fears.  They would disassociate themselves from those who have these medical conditions, instilling even more fear.  Unfortunately, there are still some areas of the world that cling to these myths and fears that have been proven false since Hippocrates’s original work on the epilepsy.

This is why awareness goes hand in hand with research to find a cure.  These organizations exist and depend on the people’s support.