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Will, how do you go about finding info on volunteering for these research projects...Joan ----- Original Message ----- From: will johnston <[log in to unmask]> To: <[log in to unmask]> 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 >