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.