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Local Parkinson’s Advocates Travel to Scotland for World Parkinson Congress

Posted Nov 08 2010 7:16am

For Immediate Release

Contact: Melissa Barry

Phone: (212) 923-4700

Email: mbarry@pdf.org

Local Parkinson’s Advocates Travel to Scotland for World Parkinson Congress

New York, NY, October 28, 2010 -- Colorado residents and Parkinson’s disease (PD) advocates Valerie Graham and Kate Kelsall attended the 2nd World Parkinson Congress (WPC) in September in Glasgow, Scotland. They joined nearly 3,000 other advocates, care partners, leading scientists, doctors and healthcare professionals from around the world, to discuss the latest in Parkinson’s research and care.

While both women are well-known advocates in the Parkinson’s community, up until just a few weeks before the WPC, they were not sure they would be able to attend.  Due to a series of fortunate events, they were able not only to attend the congress, but also presented a poster about their advocacy efforts and worked with 15 of their fellow advocates from the Parkinson’s Disease Foundation (PDF) to bring news from the WPC back to the US Parkinson’s community.

Ms. Graham, a retired attorney from Centennial and Ms. Kelsall, a retired coordinator of  hospital volunteers from Northglenn, whose education and training includes an MSW and CPA, have both been living with Parkinson’s for well over ten years.  Their work focuses on the needs of people, like themselves, who have undergone deep brain stimulation (DBS), a surgical procedure used to treat the disease.  Last year, the two attended PDF’s Clinical Research Learning Institute (CRLI), a program that trains people with Parkinson’s to become advocates within the clinical research process.  They say that this experience allowed them to continue their work, with a new focus on educating others about clinical trials, and finding ways to include their own voices in the research process – which they did at the WPC.

At the WPC, as scientists presented the latest in Parkinson’s research, Ms. Graham, Ms. Kelsall, and other people with Parkinson’s presented information on the efforts they undertook to further the cause in their communities.  The pair’s poster, entitled “Role of Patient Support in Shaping Expectations and Decision Making for DBS Surgery,” focused on the impact that their volunteer work with the DBS support group and the DBS medical team at the University of Colorado Hospital has had on patients considering the surgical procedure, as well as on patients' families.  Furthermore, as a means of expanding the volunteer services that they provide to the DBS and PD communities, Ms. Graham and Ms. Kelsall formed a nonprofit corporation, which was accorded federal tax-exempt status shortly before their departure to Scotland.

While Ms. Graham and Ms. Kelsall were initially awarded partial travel scholarships to help cover the cost of attending the WPC, these scholarships did not include airfare. Thanks to a last minute donation from a couple of individuals, as well as from United Airlines, two round trip tickets were provided for the pair, enabling them to arrive in Scotland prior to the commencement of the WPC.

Ms. Graham says that their story is “proof positive that miracles do indeed occur! Needless to say, we owe a profound debt of gratitude to those around us, without whose guidance and support we would never have even considered attending the 2nd WPC, much less submitting an abstract for presentation at the conference.”

PDF Executive Director Robin Elliott says, “PDF is very proud of the work that Kate and Valerie presented at the 2nd World Parkinson Congress in Glasgow, Scotland – a poster that was seen by nearly 3,000 people.  They are wonderful examples of the purpose behind PDF’s Clinical Research Learning Institute: to ensure that people with Parkinson’s are empowered to play a role in all aspects of the Parkinson’s community’s work.”

For more information about people from the Parkinson’s community who participated in the WPC, please visit www.pdf.org/en/world_parkinson_reporters .

About Parkinson’s Disease
Parkinson’s disease is a progressive neurological disorder that affects nearly one million people in the US and seven to 10 million people worldwide.  Although promising research is being conducted, there is currently no cure for Parkinson’s. 

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 $85 million worth of scientific research in Parkinson's disease, supporting the work of leading scientists throughout the world and has dedicated over $34 million to support people with Parkinson's and their families and caregivers through its educational and advocacy programs.

At the heart of PDF's work is the participation of people with Parkinson's.  Whether it is through its 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 the clinical research process - 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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