Wednesday, May 1, 2013

Getting creative about funding Parkinson's research: climbing mountains and making films

We wrote recently about a group taking research funding into their own hands, or legs in this case. A group of eight patients working with our grantee Jeanne Loring of the Scripps Research Institute are raising money to fund their own potential therapies. Their approach is unique, to say the least -- through a project called Summit4StemCell they are recruiting donations to climb mountains. They’ve climbed Mount Kilimanjaro and in October plan to climb to base camp at Mount Everest.

Now, a film-maker is raising money through the independent fundraising site Kickstarter to film their journey and delve into the issues of research funding. In their Kickstarter pitch they write:
The film will follow the progress of the eight patients and the stem cell research project. At the heart of the film will be the October 2013 trek by several of the patients to Mt. Everest Base Camp. The climb is to raise funds and awareness for the research project. This is the unusual part: the funding for this research is being driven by the patients. Because this particular stem cell therapy is from-the-patient-to-the-patient, traditional and obvious funding options are not available.
Donors get thank you gifts according to the size of the donation, ranging from signed copies of the film DVD to tours of Loring's San Diego lab where the work is taking place.

I've known about Kickstarter as a mechanism to raise funds for new products, but hadn't seen it used to help create a film. It turns out that's because I wasn't looking. When I spent some time on the site not only are there many films looking for donations, quite a few of those films are raising awareness for particular conditions and diseases, like Parkinson's disease. If done well, these films can both raise awareness and, as a result, inspire more funding for those research into new therapies. Here's the pitch for a film about autism and one about a pretty amazing looking group of dancers with various disabilities.

We, of course, already fund groups working to develop therapies for these conditions, but our funds alone aren't going to be enough to get therapies all the way to patients. (There's a list on our website of all the awards we fund, which can be filtered by disease area, and we have fact sheets that list our projects for different disease areas.) Groups like Summit4Cure are taking creative approaches to supplementing existing funding sources and developing new therapies for their disease.

A.A.


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