On Wednesday, May 10^th, the Parkinson’s Foundation presented a webinar entitled “Expert Briefing: Understanding Gene and Cell-Based Therapies in Parkinson’s”. Given my recent posts about Stem Cell of America, this obviously was of interest to me, so I tuned in. (If you’d like to see the recorded webinar, click here. The Expert providing the Briefing (a Dr. Roger Barker of the University of Cambridge) explained there have been multiple studies conducted using what seemed to me to be pretty much the same approach used by Stem Cell of America. According to Dr. Barker, some of these studies showed the treatment to be extremely effective: in one early study, which had only two participants (both of whom had been diagnosed ten years prior to the stem cell treatment), both patients were able to stop taking Parkinson’s Disease (PD) medications, and still hadn’t needed to resume Parkinson’s meds when they were last observed TWENTY YEARS after the stem cell treatment! However, other studies found the treatment to have no effect at all, or even to make things worse. In one such study, 50 percent of participants developed new dyskinesia – in some of these cases this new dyskinesia was considered severe.

So, umm, WTH? Dr. Barker’s conclusion seemed to be that this is still a very promising therapy, but that a lot more research still needs to be done. He also reiterated that stem cell therapy is still experimental, and any legitimate medical organization will not charge you, the patient, for experimental treatment. In fact, they may even pay you to participate in a study. If an organization (such as Stem Cell of America) wants you to pay them (such as the $15,000 I was quoted by Stem Cell of America) for a treatment that’s still experimental, you should beware. Ask for peer-reviewed medical journal articles supporting their methodology.

On a more recent Wednesday (May 24th), I received an email from Fox Insight, saying the “Michael J. Fox Foundation, is collaborating with a global pharmaceutical company to better understand patient and care-partner preferences for certain types of Parkinson’s treatments.” The survey asked many a question about my knowledge of, and attitude toward, stem cell and gene-based treatments for PD. At the end of the survey, it straight up asked if I’d be willing to participate in a clinical trial of a stem cell-based therapy. I said yes; now I guess I just wait and see if they contact me again. Other than the potential for dyskinesia, the only thing that worries me about this trial is that it involves taking immunosuppressants for an entire year after the treatment is administered. That doesn’t sound conducive to travel. Watch this space for future developments.