James Heywood (right) and his nephew Alex pour cold water over Heywood parents John and Peggy as part of the ALS Ice Bucket Challenge. Alex’s father, Stephen Heywood, passed away from ALS in 2006.PHOTO BY BEN HEYWOODI am amazed and grateful that the #IceBucketChallenge has brought so much attention and new funding to amyotrophic lateral sclerosis (ALS), the disease that took my brother Stephen in 2006. Ignited by patients, viral in nature, and independent of any organization, the campaign is like nothing the ALS community has ever seen.
The influx of cash and attention is a blessing, but the challenge also raises anew questions about donor intent and responsibility. It also puts ALS organizations—in particular the ALS Association (ALSA), which has received the vast majority of recent donations—in the spotlight, as they face the responsibility of deciding how to invest these new funds to serve the patient community.
Ideally, before giving money donors would evaluate the effectiveness of each organization in terms of how its funds are used to serve patients. Sadly few resources exist to inform donors. Charity Navigator, an organization that does attempt to address this evaluation gap, provides a four-star evaluation of financial efficiency based on a series of transparency and independence measures. Almost all of the major ALS organizations, ...
