Ok here comes the unsolicited lecture and advice. It has taken 6 years to meet some serious goals with the Parkinson Pipeline Project. That is 6 years of weekly meetings online and in conference calls. We moved up in the world after PDF started sponsoring us and no more yahoo meetings.

But the most important thing we had was exactly what Margaret Meade says works: "a small group of dedicated people.' Probably even more important, we have a visionary with a plan. We stuck to that plan.

Now at 6 years into the project, we are seeing the results. Amgen was a nightmare that only strengthened our resolve. It taught us so much about ethical conflicts and the reality of big business. When we first presented our amateur Bill of Rights to a select group of PD organizations they were quite negative and truly didn't believe that we would be taken seriously.

That was proven incorrect yesterday.

After 6 years we are monitoring treatments in a super database, consulting with industry, collaborating with academic clinical researchers by regular communication, continuously educating on the PPP website, presenting at conferences and exhibits.

And what results are we seeing: we're at the tables, we are in medical journals, we have been asked to write an article for a medical journal from a patient's perspective and will hopefully be published as patient advocates for PD, we are in the FDA [only cancer had advocates before PD], we continue to plan ahead and try to ignore the fact that there is no treatment at this time to save advanced patients and GDNF could have done that. PDF is sponsoring us.

Science, with all of its gucky stuff that they talk about putting into your body is your only hope unless, as Rick says, people find something themselves. It is far from perfect and frequently invalid and dishonest.

Here is the unsolicited advice:

Plan ahead, nothing happens quickly. Devise a model of what you hope to do.

Trust your coworkers unconditionally. They will come in and out with this illness. Get over the inevitable disagreements quickly and carry on.

Allow for cognitive deficits and on/off each and every day.

Meet regularly. few exceptions. The committed ones will show themselves.

Create an email list or yahoo group. Use it constantly to educate each other.

Set your goals and don't look back.

Be patient but don't ever give up.

Let others know what you are doing.

Should you feel guilty if you are not an advocate? Of course not - that's like saying everyone should learn how to sew. I actually used another girl's sewn shorts and turned them in for a grade in Home Ec after she had turned them in and gotten her grade already. Got caught- only course I ever flunked - junior high Home Ec.


START NOW.

Is it a full moon?
Paula