Bruce: Thank you for bringing this to the group's attention.
I would appreciate your sharing with Michael my earlier message to the list
concerning his exclusive affiliation with a particular Parkinson's group.
I believe most if not all respondents agreed with the conclusion that,
until he gets a good look at the various groups, individuals and goals, it
would be good for him to postpone any determination to "join" one
organization.
A copy of my message follows.
Thanks again. Good luck.
Bob Dolezal
TO: The Parkinson's Informationn Exchange (12-4-98)
Muhammad is the "previous celebrity spokesman for the group (NPF)?" Gosh,
when was he deposed? Last I read, and heard, he was NPF's knight in
shining armor. And a darned good one, I might say! When was the coup
d'etat?
I wonder, how many in the Parkinson community would vote for Michael J. Fox
to affiliate, now, with one of the Parkinson organizations, to be used
exclusively by that organization? How many would vote for him to remain
neutral, at least until he understands the lay of the land, the politics
of the disease, temporarily at least working for the community at large
rather than affiliating with one organization?
I do not question the value of NPF to the Parkinson's community. It is an
excellent organization, doing good things. But it is not alone on that
score.
What I do question are the benefits that will accrue to our community if
Michael J . Fox becomes the exclusive property of one organization, as
opposed to remaining independent and responding to all proposals on the
basis of their merit rather than their organizational origin.
This is one of the most immportant issues to face the Parkinson community
in the six years I have been a member. I doubt that we have much of a
say, but,if we did, how would you vote?
Bob Dolezal
At 12:01 AM 12/4/98, judith richards wrote:
>http://www.foxnews.com/
>
>Facing Parkinson's Disease, Michael J. Fox Counts His Blessings
>7.36 a.m. ET (1236 GMT) December 3, 1998
>By Bill Hoffmann
>
>NEW YORK =97 An upbeat Michael J. Fox believes he'll be cured of
>Parkinson's disease =97 and insists he wouldn't trade places with anybody.
>
>"My life is so filled with positives, so filled with blessings, and so
>filled with things I wouldn't trade for anything in the world," Fox
>says in a 20/20 interview to air Friday night.
>
>The good-guy actor stunned the world last week by revealing he secretly
>has battled the crippling =97 currently incurable =97 nerve disease for
>seven years.
>
>The startling admission has brought thousands of phone calls, get-well
>cards and e-mail messages from heartsick fans around the world.
>
>But the 37-year-old star of the ABC sitcom Spin City says he doesn't
>feel sorry for himself and will never give up.
>
>Fox tells interviewer Barbara Walters he's optimistic scientists will
>find a cure for Parkinson's and he'll be free of the illness by the time
>he reaches 50.
>
>"I just feel like I've been in God's pocket for so long, I just didn't
>think that I was going to be hammered with this," Fox says of his
>positive attitude.
>
>"[I felt] that I would find a way to live with it, to learn from it and
>deal with it =97 and I have."
>
>Fox also says he refuses to consider his condition =97 which typically
>strikes people over 60 =97 to be a tragedy.
>
>"No, not by any stretch of the imagination. It's my life," he says.
>
>Fox said the symptoms of Parkinson's sometime affect him so severely his
>hands shake uncontrollably. He's had to alert cameramen on his series to
>keep from focusing on his hands.
>
>Last spring he had brain surgery to relieve some of the symptoms and may
>have to go back for another operation.
>
>The actor =97 who also starred in the '80s sitcom Family Ties and the Back
>to the Future movies =97 has insisted he'll continue to work on Spin City
>for as long as possible.
>
>Meanwhile, the National Parkinson Foundation hopes Fox will help raise
>money to find a cure by becoming their spokesman.
>
>Abraham Lieberman, the foundation's medical director, has asked the star
>to "lend your energy and your spirit and your good ideas to us."
>
>A spokesman for Fox said he has not received any formal offer, but may
>mull the possibility of a role with the group.
>
>If Fox were to work with the nonprofit organization, it could bring in
>untold millions in donations to the usually overlooked group, foundation
>officials said.
>
>That could lead to a cure or at least a greater understanding of what
>causes Parkinson's, which attacks the central nervous system.
>
>The disease is not hereditary and can strike at any age, although it
>usually hits older people.
>
>The previous celebrity spokesman for the group was boxing legend
>Muhammad Ali, who did public-service announcements and interviews about
>his battle with the disease.
>--
>Judith Richards, London, Ontario, Canada
><[log in to unmask]>
> ^^^
> \ /
> \ | / Today=92s Research
> \\ | // ...Tomorrow=92s Cure
> \ | /
> \|/
> ```````
At 3:59 PM 12/11/98, Bruce Warr; IFSM (FACULTY) wrote:
>As I announced in a message earlier this week there is a meeting of the
>Maryland Young Onset Support Group at Johns Hopkins tomorrow, Saturday,
>12 Dec. The meeting will be held in the Conference Room of the Outpatient
>Clinic, 601 N. Caroline St., Baltimore, MD. Since the President of the
>group is hospitalized and the APDA Co-ordinator will be out of town on
>business, the Vice President (yours truely) will be in charge.
>
>I have just been notified by the Johns Hopkins Public Relations
>Department that Michael J. Fox will be in Baltimore tomorrow and had
>expressed interest in attending our meeting, schedule permitting.
>
>So now is your chance. If there is anything you would like me to ask him
>send me e-mail immediately. I do not intend to bend his ear, just treat
>him as I would any visitor. But, if the opportunity presents itself I will
>take advantage of it.
>
>(I don't know how I fall into these things. A few years ago Nobel Prize
>winner Dr. Herbert Simon was speaking at our campus. I was assigned to
>escourt Dr. Simon while he was on campus. After a luncheon with the
>Univeristy higher-ups there was a 1-1/2 hour break until his first
>lecture. It was just him and me. I took him on the dollar tour of the
>campus, but most of the time was spent discussing my doctoral research
>[Dr. Simon initiated the conversation, not me]. I was able to cull many
>pearls of research wisdom that have benefited me.)
>
>Ease the Burden, Find the Cure.
>
>Bruce
>57/10
>Sinemet CR, Mirapex, & Tasmar
>
>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>Bruce G. Warr, Ph.D. (C) |"Experience is what enables us to recognize
>Healthcare Informatics Lab | a mistake the next time we make it."
>Information Systems Dept. |
>University of Maryland |"Good judgement comes from experience,
>Baltimore County | Experience comes from bad judgement."
>
>http://umbc.edu/~warr/
>(V) (410)455-3206
>(F) (410)455-1073
>
>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
