During my journey, I have had a lot of contact from many great organizations who are working to support the Parkinson’s community. Regardless of what they do, they all want the same thing, money. I get it- they need dollars to fund their good work. How are supposed to choose how to allocate our donations and efforts? I saw what I thought was a unique approach in a blog post that Kate wrote, she highlighted the efforts to raise money and awareness of Roy and Lynn Roden. In looking at their fundraising website, I saw something unique. In the donate portion there were a number of options. Apparently, these were the entities that they wanted to support. What a great concept. While it may now work for all of us in our fundraising efforts, it leads me to my next point and the real area of concern that I have.
There are a lot of separate efforts in finding cures, drugs for treating symptoms, and drugs for treating symptoms of the drugs we take for symptoms. I can’t tell you how many times I see advances in research that are published multiple times, by multiple parties. It is not because multiple researchers on a single team are publishing in multiple publications. It is because multiple efforts are attacking the same issue, or drug without collaboration. The Michael J Fox Foundation (MJFF) shares results of research they fund as part of their business plan. As I was finishing up the first draft of this post Todd Sherer, CEO of MJFF, published a piece in Forbes outlining the organizations efforts to collaboration. I don’t know if other “players in the field” do the same. I understand research leads to results, but it also leads to notoriety for the researchers and big money to whoever they work for. I really do get it, but the clock is ticking.
We also must do something to move collaboration forward. I don’t have the answer. Maybe Roy has the right idea. I know whenever I speak with various organizations in the PD field, I always bring up, “working together” and “make the effort to be inclusive of your dollar competitors, where ever possible.”
Join me in trying to find the solution. The MJFF shouldn’t have to do this alone. We are the answer. While all these great organizations are the vehicles to our destination, we are the drivers. Please share any ideas you may have.
TWO SHOES ON AGAIN