Originally published June 27, 2013
Earlier this year, I had the opportunity to participate in an on-line forum (dubbed “Google Hangout”) where I posed a question to Michael J. Fox and he, in turn answered . While both the question and his answer were more complex (or perhaps convoluted), in essence, I was challenging our societal response to illness. In this case, specifically to Parkinson’s and the Michael J. Fox Foundation but I do think it can be extrapolated to other disease areas.
When I was first diagnosed with PD some 13 years ago, I was thrilled to see the almost simultaneously-incorporated Fox Foundation burst onto the fundraising scene with a fervent and determined proclomation to find a cure for PD within 10 years. They forged an organizational structure that would fast-track research efforts that showed promise, they built a successful team of fundraisers and a solid core group of philanthropic supporters. Research was, and continues to be, carried out in a broad spectrum and at a prolific rate.
Good stuff. No question. Yet, what I do find disconcerting is the ‘drift’ away from the original goals and the raison d’etre of the Foundation – to find a cure. There is more talk now of early diagnosis in order to improve treatment of PD – on drug therapies to alleviate the symptoms of PD – on coping strategies for living with PD. Again, all worthwhile pursuits but no longer the consequential cure.
I don’t want to sound Pollyanna. I don’t believe it is an easy task. I recognize that the Foundation has accomplished a great deal. I have donated to the Foundation and even run fundraisers on their behalf. Yet, I worry that the initial goals and challenges that were set out have been lost or corrupted along the way. Does the draw of the pharmaceutical industry dollar pervert the purpose? Does the Foundation become an institutionalized entity in the PD research community rather than a vehicle set up to bring about it’s own demise through uncovering that cure? And what if there is no cure?
I don’t pretend to have the answers but, if anyone out there is taking a survey, put me down as one who still “wants a cure”.