A Young-Onset PD diagnosis and the subsequent issues that came with it, including having to find out what life held for me while dealing with an incurable disease with a family to raise and work to be done, was enough to make me take a long, hard look at getting involved as an advocate.
As fate would have it, the Parkinson’s Disease Foundation and their Parkinson’s Advocates in Research (PAIR) Learning Institute made it easy for me to accept the challenge of doing my part in helping to make a difference.
I applied and was one of 27 people from across the country with Parkinson’s Disease that were invited to take part in the inaugural Parkinson’s Advocates in Research Learning Institute that took place in New York in July of 2008. What I experienced during those three days of intensive training in all facets of the research process gave me the confidence to speak to any and all about the importance of getting involved in the clinical trial process.
The Parkinson’s Advocates in Research Learning Institute, which most recently was offered in several areas of the country throughout the year, is set up to educate people with Parkinson’s and their care partners chosen to attend in the history of the clinical trial process, how trials are developed, who runs the trials, issues related to participation in clinical trials, trial results, and dissemination of this information. Leading experts in the field of Parkinson’s Disease research are invited to be on the faculty for the Institutes. One of the most important aspects of the learning process starts when the experts meet the advocates. It is then that both realize the importance of collaborating as a team to focus on working to develop better treatments and, ultimately, a cure.
The PAIR Learning Institute has been one of the best learning experiences for me. As a Parkinson’s Disease Foundation Research Advocate I have had numerous unique opportunities to advocate for research in the PD community. I have had the privilege of speaking to individuals, presenting to groups and organizations, taking part in the research grant process and focusing on issues that are of importance to me such as disparities in clinical studies. My advocacy has afforded me the chance to meet some of the most incredible people – whom I consider to be heroes – who live day in and day out with an incurable disease but are not about to give up the fight for a better future for us all.Another important aspect of the experience is being able to have the continued support of PDF following the Institute.
The opportunity for getting involved with the Parkinson’s Disease Foundation and their Learning Institute is available now for those of you living in the Midwestern U.S. The next Parkinson’s Advocates in Research Learning Institute is scheduled for Oct. 18th to the 20th in Oak Brook, IL (Chicago area).
I keep saying that the research community is not going to find a cure without us as equal partners in the process. The Parkinson’s Disease Foundation has been a leader in not only providing a place at the table for people living with PD, but listening to the suggestions of the PD community, and allowing our voices to be heard.
Please take advantage of this opportunity to get involved and keep informed of other Parkinson’s Advocates in Research programs. To apply to the upcoming Midwestern Learning Institute and learn more about PAIR go to: http://www.pdf.org/en/crli