Re: Advocates & More Advocates

[Joan Hartman <jmh13@xxxxxxxxxxxxx>]

Will, how do you go about finding info on volunteering for these research
projects...Joan
----- Original Message -----
From: will johnston <johnston@xxxxxxxxxxxxxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Wednesday, October 13, 1999 8:57 AM
Subject: Advocates & More Advocates


>         Walter Huegel said:
>     The group that seems to be missing as public advocates for PD research
> are the researcher, clinicians and doctors who are involved with PD
> research and treatment.  Is it my impression that they seem to be above
the
> fray?  If so, how can they become involved?
>
> I would add:
>
>         There is another group:  The patient-participants who volunteer
themselves
> in various PD studies funded by the government [primarily through the
> N.I.H. / Congressional appropriations / Udall Act] and by private
> institutions [A.P.D.A., N.P.F., P.D.F., etc.], pharmaceutical companies,
> and individuals.
>
>         I am in that group. I feel that I am getting the best care and
treatment
> available as a reward for what I am doing. There is cost to me in the form
> of time spent, usually travel expense which may include a hotel stay, and
> an unknown probability of damage resulting from a bad result which could
> come from any medical treatment.  My benefits are worth the cost to me.
> The possible benefit to all PD patients makes the government and private
> expenditures seem small, very small when one thinks of the million plus
> people in the U.S. and insignificant when one considers the PD patients
all
> over the world and the Parkinson people in the generations to come.
>
>         Currently I am in three studies with N.I.H. funding at Johns
Hopkins
> Hospital in Baltimore, in the 65th month of a drug study at Robert Wood
> Johnson Medical School in New Brunswick, New Jersey, [financed by Orion
> Pharma of Espoo, Finland], helping design and set-up a Parkinson's disease
> exercise and physica therapy study with master's degree students at the
> University of Maryland [Eastern Shore Campus] in Princess Anne, Maryland,
> and doing one study on my own.
>
>         I am also seeing contributions of brain tissue at autopsy of PD
patients
> for a study being done at Johns Hopkins. There is no cost to the donors'
> families or estates.  Congress cannot provide this tool for research for
> us. We have to make that contribution ourselves.
>
> Will Johnnston
> A.P.D.A. DelMarVA Chapter Pres.
> 4049 Oakland School Road
> Salisbury MD 21804 USA 410-543-0110
>