Re: BOARD OF DIRECTORS OF TMIC
O'Dell (levi(AT)i-plus.net)
Tue, 25 Aug 1998 12:06:35 -0400
I am just as frustrated as anyone on the list about the lack of research and
knowledgeable physicians on TM. But we should not in our frustrations bite
the hands that feed us. The only reason that we are even able to read the
info at the TMA site or communicate on the list is due to the efforts of
volunteers who started the long difficult task of forming the TMA just a few
short years ago. Our President took it upon herself to try to do all of
this because her daughter was stricken. We do not have a board of
directors. We have four very fine and capable persons who are purely
volunteers and have put in many hours of their personal time and money into
getting this group going. Please remember that the Transverse Myelitis
Association was formed for informational access to persons who were not
finding the knowledge they hungered for soon after diagnosis. Jim Lubin
(whom I have not yet met) created and maintains the Transverse Myelitis
Internet Club. These are both done voluntarily and each serves a different
purpose. I am not sure if all of the OFFICERS have internet access yet.
But they are all professional people with jobs and families and lives with
all the complications of TM that we as members have. Since there has been
no specific research on just TM there are no real specialist out there to
ask to serve as advisors. The two we have were both at the conference in
Ohio in May. I have learned that Dr. Lynn has treated TM patients.
Since our individual physicians have not had large amounts of experience or
large numbers of patients she is as capable as anyone. I had questions
also when all of this posted a few weeks back. But instead of talking it
out on the list I asked the people who knew the answers. Their e-mails are
in your membership directories and you can contact them and they will get
back to you. Any physicians we find who are knowledgeable and are willing
to put in time and maybe travel free of charge I am certain would be
welcomed by our officers. Just give the doctors the addresses to get in
touch with them.
Please try to go to Seattle next year. It will be costly and I am on
leave of absence myself so I will have to literally be saving pennies. But
getting together with the officers to sit down and learn what they have
done for us already and are trying to do in the future will be very valuable
to us in learning how we can each one do something to help. Mainly we need
to raise funds to be able to get attention and to fund research. No
researcher can work without funds.
We are headquartered (in private homes) in the state of Washington because
that is where the President lives and that is the state she has had to go
through to get non-profit status. Until I met these folks in Ohio, I had
no idea of the amount of work, expense, and travel they have had to put
in to get us this far. Without them we would not exist. We owe them
gratitude and most of all we need to support them and find ways that they
need us to help. Read your welcome packets again to get acquainted with
Deanne and the purpose of the TMA.
I am also very interested in Dr. Kerr and have contacted Gunny about him
for my own information. I am not saying we don't need him. First let Dr.
Kerr decide if he has the time to work voluntarily for us. Then give
Dr. Kerr the opportunity to volunteer to the officers. They know the steps
they have to go through legally.
Don't discourage our officers. They are and have been our sources in
getting as far as we have so far.
Drema
-----Original Message-----
From: Joel VL Cordeiro <jvlcjvlc(AT)juno.com>
To: tmic-list(AT)eskimo.com <tmic-list(AT)eskimo.com>
Date: Sunday, August 23, 1998 8:22 PM
Subject: BOARD OF DIRECTORS OF TMIC
>Dear Members of the Board,
>I am amazed that none of you took the time to respond to my letter
>suggesting that Gunny's cousin, who is a Doctor in Neurology, to be added
>to the advisory staff.
>Why do any of you hold your position if you are not following a concerted
>effort to add to the advancement of this club of informative information,
>as well as direct communication.
>I don't know if you have your positions just to say you have them or if
>you take those important positions to heart? I have been on a board of
>Directors in the past for three years, nonprofit, and it is a part to be
>taken very seriously.
>I know there is a lot of hard work, but I am now insulted that none of
>you took the time to answer my request. Please respond.
>Sincerely,
>Joel V.L. Cordeiro in California
> victim of TM 8/30/96
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