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Volunteers Help Make Parkinson's Research Possible

Years ago, diseases like cancer and HIV/AIDS presented patients with an imminent death sentence. While there's no doubt that receiving a diagnosis of serious illness remains a life-changer, today many patients with conditions like these can look forward to a much brighter prognosis, thanks to new and better therapies and the researchers who have dedicated their lives to developing them.

Yet no matter how many researchers join the effort to find treatments that improve patients' lives, the endeavor cannot move forward without the active involvement of another group of participants. Less celebrated than the scientists, but no less critical to new treatments landing in medicine cabinets, are the everyday people behind the scenes whose extraordinary commitment makes research possible — the volunteers who give of themselves, allowing clinical studies to happen in the first place.

And we need more of them.

I'm an advocate for Parkinson's disease research, in part because I have been living with the disease for close to 20 years - but also because the foundation I started in 2000 is convinced that we're closer than ever to developing Parkinson's treatments that far exceed what's available to patients today. So far we've invested more than $215 million in research with one goal: to speed breakthroughs that can stop the progression of the disease so that a newly diagnosed patient need never advance to full-blown symptoms. No such therapy yet exists, but we're working to change that. And we need your help.

Here in Houston, a team led by Joseph Jankovic, M.D., at the Baylor College of Medicine has joined forces with us on a clinical study called the Parkinson's Progression Markers Initiative. PPMI seeks to identify a critically needed research tool called a biomarker, which will allow scientists to measure biological differences between people with Parkinson's and without, and track the progression of the disease in patients' brains and bodies. These are fundamental needs in the development of next-generation treatments for Parkinson's or for any disease. Simply put, though we've made real therapeutic advances already, finding a biomarker would blow the roof off what we've been able to do so far.

You may not have a personal connection to Parkinson's, but rest assured the need for biomarkers - and for collaborative efforts to speed cures - touches us all. Some of the most exciting science reported in the past year emerged from the Alzheimer's Disease Neuroimaging Initiative (ADNI), a study similar to PPMI, which in a few short years has identified extremely promising biomarker candidates for Alzheimer's. The ADNI team has demonstrated that when communities work together on collaborative, open-source research efforts, results come much more quickly.

To paraphrase a familiar quote: Of those to whom much is promised, much is expected. Every clinical study aims, in some way, to fulfill the promise of scientific innovation - but none of these studies can be successful without the participation of committed volunteers. There is no department or secretary of cures. It's us.

Fox is an advocate, author, actor and the founder of The Michael J. Fox Foundation for Parkinson's Research. For more information on the Parkinson's Progression Markers Initiative, call (877) 525-PPMI or visit www.michaeljfox.org/PPMI.

 

Read the original op-ed on chron.com

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