The Michael J. Fox Foundation's policy and advocacy volunteers are a dedicated group of individuals who work to advance government initiatives in support of people with Parkinson's disease (PD). They meet with their elected officials in Washington, DC; educate their communities on PD; and build relationships with local government officials to advance policies in their states.
These individuals advocated for the PD community for many years under the Parkinson's Action Network (PAN) and have continued their activities with MJFF since PAN merged with the Foundation in June.
Our volunteers from Tennessee explain how public policy impacts people with Parkinson's disease and why they advocate for the PD community. Stay tuned for upcoming profiles of policy and advocacy volunteers across the country.
Explore policy issues affecting the Parkinson's community and learn how to contact your elected officials to make your voice heard.
1. What is your connection to Parkinson's?
Alan Zimmerman (AZ): I was diagnosed with Parkinson's disease in June 2014 but had symptoms several years earlier. Since that time I have become very active in Parkinson's advocacy, and I am participating in a five-year study at Johns Hopkins University in Baltimore, Maryland to find PD biomarkers. I'm also involved in MJFF's Fox Insight online and wearable device study.
Sue Laux (SL): I was diagnosed with young-onset PD at the age of 37, about 30 years ago. When I was diagnosed, I was married and had two young children. I was angry that I was young and had a disease that normally affected older individuals. I vowed to learn everything about the disease. I have a sibling and other family members who also have Parkinson's disease, and I discovered genetics plays a part in my diagnosis. I carry the PARK2 genetic mutation associated with young-onset PD. I also have been in over 37 research studies to date. There is much research to be done, and we need participants to take part.
Peggy Willocks (PW): I was diagnosed with Parkinson's disease 22 years ago, having symptoms as early as my late thirties. I had a difficult time being accurately diagnosed, and it was such a relief when I was finally given a label. There's a great need to identify with a group of people who understand you and can empathize with your illness.
2. Why did you choose to become a policy and advocacy volunteer?
AZ: I chose to become a policy and advocacy volunteer because it provides an opportunity to lobby Congress for more research funding and to promote PD awareness among our lawmakers in D.C. I can schedule meetings with senior state government officials and raise awareness among them, as well.
SL: In the mid-1990's, I first attended the D.C. Forum -- an annual meeting of Parkinson's advocates established by PAN. It was a powerful meeting, with hundreds of people with Parkinson's in attendance. Meeting and networking with all those at the forum was very inspirational and empowering. After that I became active with PAN in Illinois, where I was living at the time, and then later in Tennessee when I moved there after my husband retired.
PW: After getting over the shock of having a chronic, debilitating disease, I wanted to learn everything I could about PD -- it's causes, the symptoms and all of the research currently being conducted. I had been a school principal, so I knew how important teaching was to understanding and living with an illness like Parkinson's. In a way, I am still teaching.
3. What is your favorite part of advocating for the Parkinson's community?
AZ: My favorite part is the opportunity to meet serious advocates from around the United States at our annual meeting in D.C. It is a great place to meet and compare notes from many of the finest advocates. And we have an opportunity to advise Congress in making budgetary decisions.
SL: My favorite part is working toward better therapies and treatments in a productive way, which one day may lead to the cure. When we go to Capitol Hill and share our stories we see how powerful our words can be. Being connected allows us to spread the word about issues important to us. I have a passion and drive for spreading information to those who need to learn more about this disease.
PW: My favorite part is getting to personally know the many people who have PD and their care partners. This networking is crucial to establishing a good advocacy program.
4. What policy issue(s) are most important to you?
AZ: We have been working for two years to create a database to determine how many people have PD and where they reside. That information could help determine if environmental exposures may be involved with the disease, for example.
Another issue of great interest is telemedicine. It will allow those without easy access to movement disorder specialists to visit these doctors using modern technology. Palliative care is important too and could improve quality of life for people living with PD today.
SL: We need to increase federal funding for Parkinson's research. The National Institutes of Health needs to be funded at an increased rate just to maintain current projects. It is important to everyone that these research projects can continue -- whether you have Parkinson's disease, cardiac issues, diabetes, cancer or any of the other major health issues facing our country.
PW: We have never had a good way of keeping track of how many people have Parkinson's and documenting demographic and geographic information about the disease. Although we have been working toward answers to these important questions there is still no solid policy to address this problem. A national database such as the one our community has been advocating for would rectify this problem, and I am looking forward to finding valid answers to such an important aspect of knowledge about PD.