26 Fox Focus | Policy
Advocacy Is
a Year-round
Effort
by CHRISTINA DESTRO
As the Parkinson’s community knows, you can, and
often must, be your own best advocate. As reported
in our last newsletter, this spring, more than 40
researchers gathered in Washington D.C. for
The Michael J. Fox Foundation’s (MJFF) inaugural
Researcher Hill Day. The researcher advocates
spoke with policy makers, urging them to increase
federal funding for Parkinson’s research.
Fast forward to September, and a network of
150 PD advocates from 38 states — community
members living with Parkinson’s and their
family members — joined MJFF and the
Parkinson’s Foundation for the Parkinson’s
Policy Forum. An interactive all-day policy
training prepared advocates for Parkinson’s
Advocacy Day, which consisted of congressional
meetings on Capitol Hill. During the meetings,
the community advocates spoke with lawmakers
about what matters to them when it comes to
research funding and access to care.
L to R: PD advocates Barry Blaustein, Michael Sweet, Bill
Clinch, Marty Acevedo, Mark Siegel, Fredrick Dimansh
Nwokocha and Patrick LoSasso joined Ted Thompson, MJFF
Senior VP, Public Policy (second from right), on Capitol Hill.
Conversations supported three priority areas:
increased access to mental health care; an
out-of-pocket prescription spending cap for
Medicare Part D; and increased funds for
Parkinson’s research.
The Forum is not only a time to discuss issues of
importance, but it’s also a time to share personal
stories and connect with other members of the
community. Michael Sweet, Sr., an advocate from
California said, “The Forum and my advocacy
give me a sense of purpose again.” MJFF is
proud to provide an outlet for advocates to
speak up about what is important to them and
make a difference for generations to come.
Advocacy is a year-round effort. Researcher Hill
Day and The Parkinson’s Policy Forum are just
two examples of the many ways our community
takes action. Explore how you can get involved at:
michaeljfox.org/contact-your-policymakers.
Help Ban a Toxic Herbicide That Causes Parkinson’s
In July, Congresswoman Nydia Velázquez introduced legislation to eliminate paraquat, a
toxic herbicide, in the United States. More than 30 countries have already banned this
dangerous chemical, which increases the risk of a person developing Parkinson’s.
Visit michaeljfox.org/policy today to ask your representatives to support the bill.