Print

Print


Dear Listmembers:

The Forum in Washington, D.C. was a source of inspiration and empowerment.
This was my first time attending and it was inspiring to see the old blending
with the new.  Joan Samuelson's Parkinson's Action Network (PAN) now merged
into and with The Michael J. Fox Foundation for Parkinson's Research) is a
beacon of light for the Parkinson's community.

The Forum goes a step beyond the important and valued work in our own
communities.  It affords the opportunity to meet old and new friends, to
discuss  the personal side of Parkinson's, to learn how others are dealing
with it, to bring it out into the public arena and the light of day.  And
most importantly, it serves as a platform from which a proactive stance can
be taken and asserted in the halls of the buildings that house our Senators
and Congressmen.

In addition to seeing Joan Samuelson and Michael J. Fox, the conference meant
seeing Robin Elliott from the Parkinson Disease Foundation, Margot Zobel and
Ken Aidekman from the Unity Walk, Carol Walton, Margaret Tuchman, Jim Cordy
and Dale Severance from the Parkinson Alliance.  It also meant meeting in
person so many people whom I have spoken with by telephone or via the
Internet, like Hilary Blue, Ivan Suzman, Arthur Hirsch and Dolly, Dale
Severance, Ken Aidekman, Linda Herman, and Sid Levin among others.

Together, by state, and by common mission, PWPs, Caregivers, Friends and
Family walked the halls and visited with the men and women who represent us
in our nation's capitol. Some appointments were made in advance and with
others, while we were there, our motivation high and confidence in our
presentation bolstered, we could stop in unannounced to make our point and
leave a packet of information with a healthcare aid, if not the
representative personally.

It was fascinating to see the impact our visits made with our
representatives.  The synergy of each of our stories combined to make an
impression.  Our Florida group consisted of seven people:   William Weiner,
M.D. from the National Parkinson Foundation in Miami, Paula Wittekind, a
young woman from Merritt Island, whose Parkinson's has forced her to leave
her teaching profession, Ellie Katz (PWP) and her husband Herbert Katz from
Hollywood, Florida, Bruce Kotek (a young onset PWP who had DBS surgery and
the stimulator turned on just 5 days prior) and his lovely wife, Ronnie from
Naples, and myself, Alison Landes, from Pompano Beach whose sister Fran, age
46, was diagnosed approximately a year ago.

Each story or contribution created an increased understanding of the
ramifications of what Parkinson's means to the PWP, their families and to the
American people emotionally and financially.  It was exciting to see the
difference our visits made. In some instances we knew before leaving the room
that the representative would sign on to support our requests for increased
funding for research via the National Institute of Health (NIH) and the
Department of Defense (DoD).

Personally, my introduction to Parkinson's came a little over a year ago.  My
sister, Fran, age 46, and I heard the diagnosis together. Prior to hearing
that, and subsequently searching the Internet for whatever information I
could find, like many others, I thought of Parkinson's as something people in
their 70's got with the symptoms being a slight tremor in the hand.

In the past two days since returning, I started walking alongside the beach
again in the early morning. I saw a woman who I had seen walking 2 years ago
with her husband on some days and other days by herself.  That was a year
before Fran was diagnosed. At the time, I did not know what her husband was
dealing with although his posture and walking were noticeably effected.
Yesterday, I turned around and approached her on her return and mentioned
that I had seen her and her husband walking together two years ago. I learned
that her husband has had Parkinson's for 12 years.

In closing, the conference was an experience upon which to build
relationships and carry on our work at home.  I am grateful to have attended
and inspired to see and hear the groundbreaking work going on in public and
private research.  The possibilities are wide open and the ground is fertile
for finding the cure.  The scientists' reports are encouraging and the
synergy of everyone's efforts and focused intentions to find the cure is
boundless.  Every effort, no matter how small, adds to the momentum and moves
us closer to the cure.

Alison Landes
Take Charge America - Cure Parkinson's, Inc.
A non-profit 501 C 3 organization
Web site: http://members.aol.com/iaacf/cpd.htm

Our domain name for our web site is www.cureparkinsons.org . However, it is
not currently residing on a host server. We have a free location on the
Internet which is noted above at http://members.aol.com/iaacf/cpd.htm .  We
aim to have the site hosted, within the next 7 to 10 days and possibly
sooner, under the www.cureparkinsons.org name.

Check back soon for new and exciting developments!