Will this is in regard to your pprivate note which made it
to the list.
I wanted to assure you that all Houston support and therapy
groups are alive and well. This of course is a mixed
blessing for those of us working in the trenches to improve
the quality of life for all PWP's, while also raising money
for PD research. The GOOD NEWS is that we are expanding our
free services across the entire Houston metropolitan area
and beyond. The BAD NEWS is that we are expanding our free
services to the entire Houston metropolitan area and beyond.
Why is this so important and so difficult? My plea to the
other PD support group in Houston tried to convey the sense
of urgency that I see and feel as President of the Houston
Area Parkinson Society. Please take note that there was no
infighting stated, intended or implied with our strong
desire to see the groups merge into one of the best local PD
support groups in the country. Houston's population growth
is among the highest in the country. This means the number
of Parkinsonians that we are trying to reach and serve is
growing faster than most areas in the country.
Our resources to deal with this growth are not infinite.
While we have been very successful in our fund raising and
recruiting of board members my belief is that we can always
do a better job. Merger seemed like a natural step. In my
opinion it will happen sooner rather than later. Change is
always difficult to manage. Some people just don't want it
or like it. Others thrive on it. Many, if not most, will
just move with it when they have to.
My hope and dream is that we in Houston will be leaders in
providing local support services and in raising funds for
research in search of a cure. It is difficult to do both of
these well. The demands on our volunteers and staff are many
and growing. With one of the finest medical centers in the
world located here in Houston and the recent addition of a
center with a stem cell focus it has been my intention to
drive our organization(s) hard to meet the challenge in both
areas.
This driving intention should not be construed to mean we
are infighting. The joint (8 member) team we assembled
cooperated and worked well together. Their recommendations I
believe will be implemented hopefully sooner rather than
later. The HAPS newsletter will continue to promote the
good work done by both groups. There is and will continue to
be great support of the PD community in Houston. The
confusion, redundancy and duplication associated with
multiple groups will simply continue until we CHANGE.
I wish there was a way to help you find leaders for your
local group. This work is taxing mentally and physically. If
you would like to chat off line I would be happy to do so.
My address to merge with the other group follows.
Bob Martone
--------------------------------------------------------
Houston Parkinson Coalition Address
To
The Parkinson Foundation of Harris County
April 3, 2000
Thanks for having me this afternoon. I will try to be brief
while addressing a topic about a disease that is anything
but brief.
As you probably know grass roots advocacy in Washington has
had considerable success in revamping how the National
Institutes of Health and the Parkinson's community are now
collaborating to improve the PD situation in this country.
The Udall Bill has quadrupled the amount of money available
for PD focused research. Going from approximately $24
million to $100 million. Tomorrow Dr. Gerry Fishbach,
Director of the NINDS (PD center) at NIH will propose $1
billion be spent on PD research over the next 5 years.
How did this happen? People and Organizations were able to
put aside personal differences and belief systems and weigh
the value of the potential success of a new effort to lobby
Washington not as NPF or APDA or PDF or HAPS or PFHC but as
a united Parkinson community. That new effort has seen the
UPF of Chicago and the PDF of New York merge into one newer
and stronger support structure. As I speak to you today my
friend Robin Elliot, Director of the PDF in New York is in
discussions with the NPF Chairman Nathan Slewett. He hopes
to encourage greater cooperation between those two
organizations.
Who are the winners in all of this? There are 11 new PD
centers of excellence. Parkinsonians get better care and
Institutions get improved funding.
There are now seed money grants being sponsored by many
organizations making it easier for quality researchers to
put together quality PD focused proposals. There are
expanding pockets of collaboration being spawned across the
country. And those of us hoping for a cure now have some
real reasons to believe that it may be at hand.
Previously warring PD organizations are now talking
cooperation, coalition, merger and what it will take to
bring about the quality of life improvements that so many
with PD need and deserve. Yet they are also recognizing how
unprepared they are for the demographic shift that is about
to take place in our society.
That shift is that the post World War II baby boomer
generation has reached the age when PD typically strikes.
The numbers that will need help could double in the next 5
years and certainly in the next 10. The cost to society is
already $25 billion annually. Are our current structures and
systems ready to handle what is likely to happen? Are there
enough volunteers? Is there enough money? Are we ready for
the unrest that will occur if this situation is not
identified as a major health concern and a major budget
deficit contributor? How will we support this growing need
in Houston where not only is the age demographic changing
but also our population growth is rising well above the
national average?
Can HAPS or PFHC meet this challenge with the resources that
we have today and with the organization structure that we
have today? I think not. It tires me just to think about it.
If it doesn't tire and alarm you by just listening to me, I
probably haven't put enough effort into this presentation.
So, what could or should be done? Can we rely on government
or the medical profession to solve this? When I became aware
of the disparity in AIDS funding compared to PD funding that
Washington had allowed to happen, it became clear that
Washington wasn't where the answer resided. At least not
without a major change in how decisions about PD research
are made. So we have the Udall Movement now successfully
addressing that situation.
Should we rely on how the doctors & researchers will tackle
this problem? Dr. Jankovic and Dr. Van Horn do great work in
this community through their affiliations with their
respective institutions, Baylor and the University of Texas.
So I thought oh yeah they will work together because it's
the right thing to do. And I looked for examples.
I thought, how about the fund raising efforts in Houston for
PD? And you know what I realized? The last time I saw Gage
Van Horn and Joe Jankovic in the same room at a fundraiser
for PD was when we had the Mohammed Ali Gala that our two
organizations collaborated on. In six weeks we raised a
substantial sum of money, more per week of effort than the
current Gala's have raised over the past two years.
My wife is being stripped of all her dignity by this damn
disease. My life has been altered radically by it as well.
The anguish on my children's' faces is always evident.
Sometimes I selfishly think being a caregiver is tougher
than having the disease because it is so frustrating to try
you darndest to make the problem go away but it never does.
I know many of you have been there and have experienced the
loss of that loved one without the hope of a cure. I can't
alter history but I damn sure can have an impact on the
future and I will not succumb to the misery of PD without
trying. That's why I am here today and I know that is why
you are here too.
It is my belief that together we can accomplish much more
for our community than we can apart. We both have limited
resources and mounting challenges. If you believe the
demographic data I talked about earlier you must see the
need for a step change in the way we do things. If the
demographics don 't get your attention, how about the
funding disparity such as the AIDS/PD situation. And if that
doesn't work think about Dr. Jankovic and Dr. Van Horn at
our Coalition dinner table. And if that doesn't work think
about Nancy, and your loved one's and the impact this
disease has had on you personally. Are you going about
supporting the millions like us, whose best chance for help
may come from collaboration and cooperation?
If you conclude that what you are doing does meet the
challenges of today and will meet the challenges of the
future then stay the course. If you think some changes might
be appropriate then let's get together to talk about what
those changes might be and how we might implement them.
I believe we have the nucleus to build the best PD Support
system in the country. We have two dedicated boards, a few
dedicated staff, many dedicated volunteers and some of the
best medical facilities in the country.
I would like to propose that we form and exploratory team
consisting of two or three members from each board plus the
two board presidents and possibly a facilitator from United
Way. The tasks would be to examine the areas where increased
collaboration would be likely to generate improved PD
services by seeking synergistic benefits and by accessing
resources and funding sources that today may be untapped.
This team should report back to both boards at a time that
they determine to be appropriate but should not exceed six
months.
Thank you for your time and attention. I would be happy to
answer your questions.
Bob Martone
President Houston Area Parkinson's Society
Bob Martone
[log in to unmask]
http://www.samlink.com/~bmartone
------------------------------------------------------------
-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]]On Behalf Of
will johnston
Sent: Sunday, September 17, 2000 9:24 AM
To: [log in to unmask]
Subject: YOUR NEWSLETTER NINA
A PRIVATE NOTE
Nina,
I was quite disappointed to see your swan song and the next
issue from
Houston. You did a real service to the PD cause in Houston
which spilled
over into other areas. Getting out a newsletter is no easy
job. I
particularly hate to see the reason for the change.
We have enough to fight without having to scrap with each
other.
Those of us who have been leaders should ease up, learn to
enjoy the
pleasures of retirement while there is some enjoyable
lifetime left, and
let the next generation of PWP take the reins. I talked with
a friend of
Joan Samuelson this past week. I have known Joan since 1992
but have not
talked to Joan for about a year. She has been a great leader
and has done a
good job, but Parkinson's is catching up with her.
PAN's time had come and Michael J. Fox came on the scene
just when he was
needed. She was successful in her lobbying and in finding a
successor. I hope the Houston
group can find a worthy successor or have a successor
quickly develop to
continue your work. Joan needs to take things easier now,
and I understand
she is.
I know I am slowing down. I really want to turn running the
chapter and
related matters over to a successor, but I have thus far
found no one who
is both able and willing to take over. In Houston you have a
large -
although widespread - population to draw from. I am not so
fortunate.
While you have the opportunity, have fun!
Will Johnnston
A.P.D.A. DelMarVA Chapter Pres.
4049 Oakland School Road
Salisbury MD 21804 USA 410-543-0110
