The Parkinson Alliance: Improving lives of patients and caregivers through research
- The Parkinson Alliance: Improving lives of patients and caregivers through research
By Carol Walton
Chief Executive Officer, The Parkinson Alliance
Special to The Movement Disorder Society
The Parkinson Alliance is a unique non-profit organization dedicated to improving the lives of individuals with Parkinson's disease (PD). This organization is committed to raising funds for the most promising Parkinson's disease research programs that will help with advancing treatment for and with finding the cure for PD. The Parkinson Alliance has been established so that 100% of all individual donations and 100% of the net proceeds from all events go directly to Parkinson's research. This is made possible through its partnership with the Tuchman Foundation, which was formed to foster philanthropic activities and charitable support and its "matching funds program."
The Parkinson Alliance is the umbrella organization for both Parkinson's Unity Walk and Team Parkinson. The Parkinson's Unity Walk is the largest single-day grassroots awareness and fund-raising event in the United States for the Parkinson's community which takes place each spring in New York City's Central Park. Team Parkinson is a fund-raising event that began as an official charity of the Los Angeles Marathon and is growing into additional race events in other major U.S. cities.
The Parkinson Alliance is also devoted to improving the quality of life in the "deep brain stimulation" community. Margaret Tuchman, a co-founder of The Parkinson Alliance, underwent bilateral deep brain stimulation of the subthalamic nucleus (DBS-STN) in 2000. As a way of keeping the DBS community connected and informed, Margaret also founded DBS-STN.org. "DBS-STN.org" is committed to helping improve the quality of life of people with PD who have undergone DBS and their caregivers. It also provides a bridge between the scientists and practitioners and the individuals with PD and their caregivers/family. The website is intended to be both a resource and a repository of information for the PD community to further the understanding of advancements in the treatment for PD and the means of trying to optimize quality of life for these individuals.
Research Conducted by The Parkinson Alliance
The research conducted by The Parkinson Alliance, vis-à-vis the DBS-STN.org entity, is a very important facet of this organization and deserves particular attention. The research staff, which is comprised of two neuropsychologists, three individuals with PD, and other editorial staff, conduct research with the intent of obtaining the "perspective of the patient." Through patient and caregiver surveys, they are not only asking questions, but also providing answers that will help the DBS community.
The Parkinson Alliance began conducting methodologically sound, survey-based research in 2004, with the impetus of obtaining the patient's experience with STN DBS therapy. The Parkinson Alliance has completed 8 reports thus far. The reports include empirical investigations pertaining to motor and non-motor symptoms for individuals with PD with and without STN DBS, particularly as it relates to quality of life. These reports are available for detailed review on the DBS-STN.org website. The current research project is entitled, "Quality of Speech in Individuals with Parkinson's Disease with and without Deep Brain Stimulation." This research is investigating how perceived speech patterns may differ between the two groups and how speech patterns impact the lives of individuals with PD.
Information from Professional Conferences and Meetings
Another facet of DBS-STN.org includes the production of reports describing information gathered from professional conferences and meetings with prominent researchers and clinicians who specialize in movement disorders, such as Parkinson's disease. Staff from The Parkinson Alliance attend these conferences to obtain the most up-to-date knowledge about advances in treatment for and finding a cure for PD. The Parkinson Alliance also facilitates presentations at some of these conferences, such as at the Neural Interfaces Conference and at the International Neuropsychological Society conference. This information is then summarized and presented to the PD community via the DBS-STN.org website.
For more information about The Parkinson Alliance and its affiliate DBS-STN.org, please visit www.parkinsonalliance.org and www.dbs-stn.org or contact 1-800-579-8440. Information about the Parkinson's Unity Walk and Team Parkinson can be found on their respective websites: www.unitywalk.org and www.team-parkinson.org.
About Carol Walton
Carol's dedication to advocacy started in 1981 when her father was diagnosed with Parkinson's disease. It was a challenging time for her and her family. She helped care for him and began to attend support groups to educate herself about this devastating disease. Her father passed away in 1993 after spending 5 years in a convalescent home. Now she is dedicated to finding a cure for this disease so others do not suffer as her father did.
In 1994 Carol attended a Parkinson's Action Network Public Policy Forum in Washington, DC, and became an advocate for research. She spent a lot of time walking the halls of Congress-and helped to get the Morris K. Udall Parkinson's Research Act passed in 1997. During that forum she met Margaret and Martin Tuchman who were also advocates. They offered Carol the opportunity to head their foundation. In 1999 the Tuchmans moved her from California to New Jersey to start The Parkinson Alliance.