>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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>