[paula_w]

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For Immediate Release
Contact: Melissa Barry
Phone: (212) 923-4700 (212) 923-4700
Email: mbarry@pdf.org


40 People with Parkinson’s Graduate from PDF’s Research Advocacy Training Program

Last week, more than forty people living with Parkinson’s disease (PD) from across the US participated in the Parkinson’s Disease Foundation’s (PDF) Second Clinical Research Learning Institute. Held in Florham Park, New Jersey, the novel three-day program prepares participants to be part of the clinical research process – the stage of treatment development that brings new, and much-needed, therapies for Parkinson’s from “bench to bedside.”

PDF’s Learning Institute, which was launched in 2008, is based on the premise that all too often, the perspectives and experiences of people with Parkinson’s are excluded from the decision-making that advances new therapies. This includes not just participation in trials – where it is estimated that less than one percent of the one million people in the US living with Parkinson’s currently participate at all – but also active roles in advising investigators on clinical trial implementation and evaluation.

To prepare for new roles as clinical research advocates, this year’s participants – a diverse group of business leaders, scientists and educators hailing from 24 states – attended educational sessions led by national experts, including clinical researchers, study coordinators, and industry representatives. The courses focused on such topics as the clinical research process and current therapies development, bioethics, analysis and evaluation of clinical research and the protection of clinical study participants.

Advocates have returned to their home communities ready to engage in a range of activities that include educating the broader community about the importance of clinical research and study participation through support groups and conference presentations and serving on clinical study oversight and advisory committees. All graduates will also take part in PDF’s ongoing educational and networking opportunities, where they can regularly share information and compare best practices.

As participant Diane Cook, said, “The Learning Institute curriculum provided an interactive and effective learning environment, where I could debate issues critical to treatment development with other people with Parkinson’s whose experience with the disease has been very different from mine. I think we are all ready to share our knowledge – both to increase the community’s understanding about clinical trials and to hopefully affect change in the way that Parkinson’s clinical research is conducted.”

Executive Director Robin Elliott, commented on the training, “The Parkinson’s Disease Foundation believes that inclusion of the perspective and experiences of people with Parkinson’s has the potential to benefit the clinical research process and therapies development. We are committed to providing the tools and resources necessary to make this happen – in the hope that the Clinical Research Learning Institute provides the foundation for these motivated consumers to become engaged and involved in a process that directly impacts their current quality of life and strives to find a cure for this debilitating disease.”

About the Parkinson’s Disease Foundation
The Parkinson’s Disease Foundation (PDF) is a leading national presence in Parkinson’s disease research, education and public advocacy. We are working for the nearly one million people in the US who live with Parkinson’s disease (PD) by funding promising scientific research to find the causes of and a cure for Parkinson's while supporting people with Parkinson’s, their families and caregivers through educational programs and support services. Since its founding in 1957, PDF has funded over $80 million worth of scientific research in Parkinson’s disease, supporting the work of leading scientists throughout the world and has dedicated over $30 million to support people with Parkinson’s and their families and caregivers through our educational and advocacy programs.

At the heart of PDF's work is the participation of people with Parkinson's. Whether it is through our People with Parkinson's Advisory Council, which advises PDF on all aspects of its work, or the Clinical Research Learning Institute, which trains people with PD to play a part in clinical research - the perspective of people living with Parkinson's ensures that PDF’s work is on target and meets the needs of the community.

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This was a fantastic conference.! As a pipeliner, I was on the planning committee; pkell went to help me. Girija and Linda H were there along with Perry Cohen . Greg and Ann Wasson. I had the pleasure of meeting Jim Finn,the recipient of pig cell implantation by Dr. Ole Isacson quite a few years ago. He has dyskinesia but the cane was for a bad hip not pd and he said he is still here bcause of the implants. He has had it for 30 years and is only 61. I told him what a great writer Steve Medeiros was [sorry if i misspelled steve] Not to speak for Jim, but i think i took him by surprise. He asked if I had ever met Steve? He said ,"He is a fisherman." I said , "Yes i know ; i have met Steve. He is an outstanding writer. He should be a counselor." So now he knows another side of you steve. I remembered that he was in your support group. I wanted to add that Violet Green drove from Philadelphia to visit with us. People with Parkinson's are so interesting and brilliant. It's the safest and most comfortable place to be - among others who understand.

paula

[jeanb]

Paula, This is wonderful! Sincere congratulations to all those who attended, those on the planning committee, PPAC, all who participated in any way. And of course special thanks to PDF for instituting the CRLI, and including pwp in every aspect of this effort. You all are making a difference!

Well done all!

Jean

[Bob Dawson]

Is this the same one that Kate Kelsall went to? (Her site is Shake, Rattle and Roll). It sounds really exciting, it sounds like they invited the right people and that whoever started this has been listening to people with Parkinson's. I don't really know what this is all about, but the sound of it makes me think it is something that could make me trust more and be angry less, if the Amgen GDNF model of behaviour is finally being over-thrown by a model that includes people whose lives depend on it, not just people whose profit margins depend on it. I have volunteered for a 3 year experiment here in Canada, but I am told that fewer and fewer people have been volunteering for clinical trials, and to me it seems the reason is that, as with Monkeys in the Middle, our people were treated like cattle. What I am reading now, about including the experience and the perspective of PWP in the discussions, as a team with doctors and neurologists and scientists and care-givers, now THAT would be a breakthrough and would bring peace of mind to all of us, and help us know who to trust, and then I would have no hesitation to recommend that people sign up for clinical trials and in general band together and fight this disease and have a good time doing it. A hard time, but a good time.
Unless I am reading this all wrong. I hardly dare hope. But if Paula was there, then I know it was good. Kate Kelsall too; she loved it, if in fact this is the same event we are talking about. And I pay a lot of attention to what people like that say, because they know what they are talking about, have far more experience and knowledge about PD than I do, and I trust them.
So I think somebody somewhere has started to do something right.
Am I on the right track here? I'm not hallucinating, am I/

[paula_w]

Hi bob,

i don't have all the names memorized but read something on a shake,rattle, and roll site about the institute so i'd say yes , probably. We did have that kind of mixture - scientists, doctors, researchers, teachers, lawyers, but they all had pd. what a difference an illness makes. i saw a few attitutde changes that brought tears to my eyes and the guy sitting next to me at dinner one night, Dan , cut my meat for me instead of staring as I struggled to do it.

PDF was involved in the Amgen, GDNF debacle and has been expanding patient awareness, education and participation to an extensive degree. Now it's up to the doctors and drug reps in my opinion to get with the program.

paula

Originally Posted by Bob Dawson

Is this the same one that Kate Kelsall went to? (Her site is Shake, Rattle and Roll). It sounds really exciting, it sounds like they invited the right people and that whoever started this has been listening to people with Parkinson's. I don't really know what this is all about, but the sound of it makes me think it is something that could make me trust more and be angry less, if the Amgen GDNF model of behaviour is finally being over-thrown by a model that includes people whose lives depend on it, not just people whose profit margins depend on it. I have volunteered for a 3 year experiment here in Canada, but I am told that fewer and fewer people have been volunteering for clinical trials, and to me it seems the reason is that, as with Monkeys in the Middle, our people were treated like cattle. What I am reading now, about including the experience and the perspective of PWP in the discussions, as a team with doctors and neurologists and scientists and care-givers, now THAT would be a breakthrough and would bring peace of mind to all of us, and help us know who to trust, and then I would have no hesitation to recommend that people sign up for clinical trials and in general band together and fight this disease and have a good time doing it. A hard time, but a good time.
Unless I am reading this all wrong. I hardly dare hope. But if Paula was there, then I know it was good. Kate Kelsall too; she loved it, if in fact this is the same event we are talking about. And I pay a lot of attention to what people like that say, because they know what they are talking about, have far more experience and knowledge about PD than I do, and I trust them.
So I think somebody somewhere has started to do something right.
Am I on the right track here? I'm not hallucinating, am I/

[Bob Dawson]

I send my thanks and gratitude to all who made this happen. You know who you are. I just opened a bottle of California Zinfandel and Ursula and I are toasting you.
Raise our glasses to the few who help the many. I feel like I fell in love all over again.