I've been going to (yes, actually going to) Walks to Defeat (nee D'Feet) ALS for 15 years.
Something has bothered me for 12 years.
ALS leaves a large, terrible wake of loved ones behind every time someone dies from the disease, and the deaths are constant. Why doesn't the attendance at walks grow at a constant pace every year to reflect that wake? Why isn't the crowd that raises awareness and makes noise in communities huge by now? It seems like the size of the crowd remains pretty flat year after year. It's large, and that's wonderful, but where is everyone with loved ones left behind who used to come to the walk three or four or five or more years ago?
Every not-for-profit needs to figure out a revenue machine that will keep it sustainable. I get that. The ALS revenue machine is almost too easy. There are thousands of newly diagnosed people with ALS every year and their families and friends and coworkers and neighbors want to help. Enter the multi-level marketing of the walk revenue machine, and those who want to help can donate, and they do. The constant stream of new diagnoses supplies many new donors and old ones fade away a few years after the funerals.
And getting people to actually show up for the walk itself isn't even a priority for some chapters. It's all about the revenue machine, and the relentless disease is the fuel that feeds it.
Some people think I'm crazy for going back year after year after year. I'm not. If more people did that, we would have more people who see the problem of feeding the monster without changing the fight. You see, the talk of achievements is recycled year after year. It doesn't take Einstein to see what has happened.
Saturday, September 17, 2016
Today I have the privilege of delivering an Ignite! talk at Stanford University's MedicineX. I appreciate the opportunity to present a message about ALS and clinical research to so many outstanding people whose mission is to rebel and improve medicine. Thank you, #medx .
The full paper on this project will be published on this blog before October 1.
The project results will also be presented in a poster presentation at the ALS MND Symposium in December.
Posted by ALSadvocacy at 8:55 AM