Buzzwords and
Bonding
by Paula
Wittekind
This year’s PAN forum was outstanding.
Jeff Martin’s and Amy Comstock’s professional manner, Laura Jane Cohen’s and
Heather Cain’s excellent training and appreciation programs for the
grassroots state coordinators, Christy Hahn’s expertise in arranging the
countless details, Joan Samuelson’s tremendously inspirational speeches, and
many other PAN staffers’ hard work all contributed to a conference that ran
like clockwork.
A vast array of speakers and
panels, together presented a thoroughly updated review of the current state
of Parkinson’s disease medical research and treatment progress. The PD
community’s legislative status and needs were reviewed and presented to our
elected officials during personal visits to their offices on the Hill.
Although upcoming new
treatments, such as GDNF and apomorphine, latest surgical techniques, stem
cell research, and funding needs were all given their fair share of time and
attention, a new buzzword is circulating through the community – or is it
two words? – clinical trials.
Parkinson’s patients by the
hundreds are needed for various clinical trials throughout the country and
the world. As patient representative for PD at the FDA, Dr. Perry Cohen has
been telling the PD community for a few years now about the growing need for
clinical trial participants, and his belief that patient advocates could be
used in a very beneficial way to expedite the entire clinical trial/FDA
approval process. Working with dedicated grassroots advocates, a
comprehensive program called the “Parkinsons Pipeline Project” was designed
to do what we can as patients to speed up this process, which averages 14
years from scientific discovery to approval for distribution. The elements
of this program are being incorporated as the core of a larger collaborative
effort among major PD foundations and organizations called “Advancing
Parkinson’s Therapeutics (APT).” Led by PDF, a national awareness campaign
and website will be launched this summer. It will soon be possible to find
a Parkinson’s clinical trial that might be appropriate for an individual pwp
by going to a website built just for that purpose. The average Internet
user with an interest in Parkinson’s information should soon become quite
knowledgeable about where clinical trials are located. Other educational
information will be included to help pwp make this extremely important
decision. More detailed information will be available on our advocacy
website to those who “join our fight” to become pipeline members. *
Strategies are being developed to get the information out to the community
to those who do not use computers.
Thankfully, there is an
expanding current view of Parkinson’s disease that views it as much more
than a neuromuscular disorder from cell death in the substantia nigra.
Definitions, evaluations, and treatments are now looking at the “whole
person”, and including psychological and cognitive symptoms, as well as
other parts of the brain that are also affected and malfunctioning.
There is a need for this “look
at the whole person” approach to be taken with clinical trials as well.
Providing more knowledge and choices about which clinical trials may be
right for each pwp, as well as presenting a thorough picture of the study
with any supplementary information available (such as pre-clinical results)
are the latest attempts by the Parkinson’s community to interact, educate,
and support each other in a collaborative attempt to find better therapies
and an ultimate cure.
The Parkinson’s community is a
well-connected and well-informed group. People with Parkinson’s, family,
caregivers, and medical/other related professions are brought together
nationally by two events - the PAN forum and the Unity Walk. This year’s
PAN forum demonstrated, more than ever, the commitment and bonding of the PD
community. Those without PD who help us seem to truly care; and although I
would not have volunteered to become involved had I not become a patient; I
am, nevertheless, very proud to be a part of this enjoyable, networked, and
caring community.
Thanks PAN!
*To find out how you can join
this exciting project, contact PPP at www.pdpipeline.org/helpwanted.asp