Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 16

Collaborating across the Globe to Speed Trials I’d been bulletproof healthy all my life. So when I was 44 and Parkinson’s came up, it seemed completely out of the blue. O nce I accepted my diagnosis — I think acceptance is a big part of being happy moving forward — it was all about what I was going to do about it. I s aid, “ Do I want to be Clyde that has Parkinson’s or Clyde that does something about having Parkinson’s?” I decided I wanted to help myself, my family and the tens of thousands of other Australians living with Parkinson’s disease ( PD). I knew the best way to accomplish this was through research, but I didn’t have the tools I needed to get involved. I quickly transitioned from a newly diagnosed patient to a research funder, establishing an organization called Shake It Up Australia Foundation. With no medical background, I was on a steep learning curve to understand how research is conducted and funded. In Australia, I found good researchers but inadequate funding, so, I partnered with The Michael J. Fox Foundation to bring their strategic direction and patient-focused funding model here. Since Shake 14 Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families It Up Australia Foundation’s 2011 l aunch, we’ve co-funded over $6 million in Parkinson’s research, making us the largest non-government supporter in the country. We realized funding wasn’t enough, though, and we needed to connect volunteers with the trials that needed them. A gain, we worked with MJFF to make their online clinical trial matching tool, Fox Trial Finder, available in Australia. Since 201 3, more than 2,000 Australians have used this resource to find recruiting clinical trials. We’re making progress in our quest to find ways and means to slow, modify and cure PD. I ’m planning for a better tomorrow, even though with PD some of my tomorrows will be different than my todays. I passionately believe there is a way for everyone to make a difference and that the combined result of our contributions will ultimately lead to a cure. Clyde Campbell is the founder of Shake It Up Australia Foundation. He lives with his wife and three children in Sydney, Australia.