I WANT YOU (to help fund PD research)!

When I was diagnosed in 2000, I was told a cure was, maybe, 10 years away. 10 years later, I keep hearing the same thing. PD is a tricky disease. It doesn’t affect two people the same way. It costs money to research different treatments and potential cures. And that’s where you can help.

I can see you staring blankly at your screen, wondering… “But I’m just one person! How can I help cure a disease that afflicts 50,000 new Americans every year, folks who are getting younger and younger at diagnosis. Folks who could include… (gulp!)… ME???”

Well, gentle reader… big journeys begin with small steps. That’s why I have decided to donate 100 percent of my author’s cut from the publication of “Deep Brain Diary: My Life as a Guy with Parkinson’s Disease and Brain Surgery Volunteer” to two very worthwhile organizations.

The National Parkinson Foundation: Since its inception more than 50 years ago, the National Parkinson Foundation has worked to address the unmet needs in Parkinson’s care and treatment. In 2010 and beyond, NPF works every day to improve the quality of Parkinson’s care through research, education and outreach. We believe by working together, we can improve the quality of care for every person diagnosed with Parkinson’s disease.

The Charles DBS Research Fund at Vanderbilt University Medical Center: Dr. P. David Charles is the principal investigator of the clinical trial I’ve been working with since 2007. Under Dr. Charles’ careful eye, 30 patients have been enrolled in this trial to study the safety and tolerability of deep brain stimulation in early Parkinson’s disease. I was one of the 15 randomized to have the surgery. The other 15 were randomized to the control group. Now, Dr. Charles is starting plans to expand the study.

Charles and his co-investigator, Pete Konrad, M.D., Ph.D., associate professor of Neurosurgery, are embarking on a two-year planning period to prepare for a large-scale study with representatives from Cleveland Clinic, Ohio State University, University of Cincinnati, Rush University, Emory University, University of California-San Francisco, University of Michigan, Stanford University and University of Florida.

The Department of Neurology has pledged $100,000 to the planning effort, and the researchers have submitted a grant application for additional funding from Medtronic, the manufacturer.

“We have been working on this for 10 years, and we need to be planning for the next study right now so we can get started once the pilot is complete,” Charles said. “If we find something in the pilot that indicates we shouldn’t proceed, we won’t, but the likelihood of that is probably low. If we wait, that is just two years longer that patients have to wait for this answer.”

And time is of the essence in Parkinson’s.

Every dollar I make from the sale of Deep Brain Diary, or any of the products in Parky Bill’s PD Emporium or the Deep Brain Diary store will be donated to these two worthwhile charities.