Policy
L to R: Policy advocates Gerry Haines (PA), Bill Clinch (CA), Laurie Sanders (NC) and Anthony Otero (PA)
ADVOCATES ADDRESS RESEARCH FUNDING
IN LIGHT OF GROWING PD PREVALENCE
alone,” said MJFF CEO Todd Sherer, PhD. “To
bring scientific breakthroughs over the finish line,
the federal government must allocate robust and
reliable funding to research.”
On the third day, planned visits with members of
Congress were thwarted when a snowstorm shut
down the government. Undeterred, advocates
regrouped and spent the day calling and emailing
policymakers to ask for increased Parkinson’s
research funding. Many also recorded short
videos and posted them to their legislators’ social
media feeds.
Late last year, Sherer addressed the growing
prevalence of PD in an op-ed published in The
Hill. In addition to raising federal research
funding, he called on Congress to create a
national, multi-agency Parkinson’s project
plan (similar to plans that have previously been
devised for Alzheimer’s and cancer).
Dedicating federal resources to research is
critical given the rising number of people with
Parkinson’s (known as disease prevalence). A
paper published in the journal Neurology in late
2017 indicated that the global prevalence of PD
will double by 2040, describing this exponential
rise as a “pandemic.” As with other diseases such
as polio and HIV/AIDS, community action can be
key to realizing improved treatments and care.
NATIONWIDE COMMUNITY JOINS IN DAY
OF ACTION
On Wednesday, March 21, MJFF and the
Parkinson’s Foundation invited advocates across
the country to take action from their own homes.
PD community members responded with gusto,
sending an impressive 14,000 emails to their
lawmakers in 24 hours.
“We need better therapies to serve people living
with Parkinson’s now, and to help the increasing
number of individuals who will be diagnosed with
the disease in the future,” said John Alexander,
a Parkinson’s policy advocate from Lake Mary,
Florida. “Although I didn’t make it to Capitol
Hill, that didn’t stop me from taking action.
Fellow advocate Mike Palumbo and I met with
our lawmakers in April when they were in Florida
to urge them to support federal research funding,
and I’m going to continue to call and email them
on this topic.”
“We could not reach our advocacy goals without
all of us speaking up together. Members of
Congress represent us, and we need to tell them
about our needs and priorities,” said John Lehr,
CEO, Parkinson’s Foundation. “When we fill
congressional inboxes with emails and make phones
ring off the hook, we let elected officials know that
our issues are important and must be acted on.”
Advocacy is a 365-day-a-year activity. The
Forum is one of many ways our community
takes action. Explore our advocacy
toolkit to learn how you can get involved:
michaeljfox.org/advocacytoolkit.
“Our Foundation supports millions of dollars in
Parkinson’s research each year, but we can’t do it
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Spring/Summer 2018