Thank you Greg...As I was reading the many comments in this thread, all I could think of was to post this letter too. Several of us in this thread signed that letter. When the letter was in that newspaper I assumed...niavely I can see now...that there would be some kind of uproar, etc. about the content, but if I recall correctly...so do correct me if I am wrong,Paula and Greg...nothing happened. It was not picked up by any other papers as a point of reference. It was not challenged by Amgen. None of the orgs commented, publicly or privately. Nada! Nothing!

We wrote that letter, sweated and cried over the content...and nothing.
To my knowledge is was virtually ignored by Amgen, just a bunch of ****** off patients who didn't get their cure. How can they understand? How can they indeed!!

I don't post on the board much because I don't feel I have sufficient or credible voice to be heard, but today I am taking that risk and speaking my mind too. I am the silent, rather bright, one in the corner who only comes out when riled and hopes in doing so to not make a fool of myself by stepping into the light. I guess it is the MDD/PTSD person in me that is still in and has been in recovery for far, far too many years. Having said my personal comments in this paragraph, I am NOT looking for sweet and kind reassurances in reply, but just stating fact about me. Overcoming a traumatic past is not easy, it just is.

I few months ago, I watched the Live Strong Cancer Video Campaign on TV...not just on YouTube, where it can be found today...all i could think of was, okay we PWPs need a campaign like that. I think I even asked that question here in NT, and got no replies, or just a couple, but no discussion. I don't see how any more books, although always welcome, can make a big difference. So many are read and then forgotten by the reader. We can write all the articles we want, but they too are soon forgotten.

I am NOT IN ANYWAY putting the Unity Walk down. I have never attended due to cost, but I here the happy comments of those who do and have attended. I do wonder though if Awareness Month, which as with all months of the year shares awareness with several other voices trying to be heard, such as Autism, truly gets people to remember PD and want to know more.

My family thinks the Central Park walk is just cute and sweet. But, then I don't have a family that cares about PD in any way, shape or form. I am waiting, but certainly not holding my breath, to see if my PA family will care enough to join our Gettysburg Walk For Parkinson's in late April 2010.

And PAN was booed, so to speak, on the NPF board a couple of weeks ago, and I did all I could to set the record straight about the Registry, which was at issue. The typical, "I don't want my personal data out there on the NET"...Hello, it is already out there on the Net! I even had a conference with Mary Richards to ensure I had my facts straight before I went back in and attempted to set the record straight about the Registry. But still there is the "PAN does not speak for me" mindset. Heck, just because I am a PAN coordinator, does not mean I agree 100% with the issues they have on the table at any given time. As we all know already, it only takes a small number of voice to get people to believe the negative. This is due to lack of education about what the orgs do...IN FACT...and in this case PAN. Personally, educating the public, and I include the PWPs and caregivers out there too, is paramount. We can't sit back and believe that ll PWPs and caregivers don't also have a misconception of what is going on around them. Every time I speak to a support group about PAN I marvel at the fact that 90% or more, 1) misunderstood, or 2) had no idea there was a PAN.

Parkinson Society Canada (PSC) has this video, but quite frankly I think it would scare anyone who views it who does not know about PD...not educated about PD. To me, it sends a scary message...just my personal opinion.

I know I am not as busy an advocate of PD as I should be, but in January of this year I said that I was "turning over a new leaf" in my role as an advocate. So was, and am doing so, speaking to groups. The one I am MOST excited about is in October when I go to Misericordia University in Dallas PA to speak one or more ancillary medical classrooms of students. Their professor wants them to hear from the "horses mouth" what it means to have PD.

"I teach and specialize in neuroanatomy and brain related disorders. I have begun searching for individuals with Parkinson's to be guest lecturers and come and speak to my students about the disease and their experiences with it. Seeing and hearing someone with a diagnosis makes a far greater impact on my students and makes them far more likely to recognize a disease when they are out practicing."

My hope is that I can make a good enough impression on the students and the professor (and any other classes I speak to that day) that I can garner a letter from him, or something along these lines to get a much firmer foot in the door at Hershey/Penn State, Johns Hopkins Medical and/or Nursing schools to start with. Both are within driving distance from my home.

Heck, I currently work with two LSVT Clinicians who are not educated properly about PD, so their involvement in my support group in Gettysburg has opened their eyes. And it is also obvious to me that they were not taught anything about PD while attending LSVT certification classes, only about LSVT. Having said this, I was impressed in January when one of my LSVT clinicians came to the meeting and showed off the newest MJFF book which was gifted her by her husband at Christmas.

So, I am grateful that I can still type my words and thoughts and that preview and backspace are available, because sadly, I stutter and stammer when I talk all too often...something I hate.

to all. I am stepping down from my soapbox now.