The Parkinson’s Action Network’s (PAN) national network of advocates is the engine that drives us forward in our mission. PAN advocates across America work in their local communities every day to raise awareness of Parkinson’s and educate their elected officials about the need for strong federal policies and funding for Parkinson’s research and support. It is the advocates’ passion, dedication, and persistence in fighting for strong federal policy and funding for Parkinson’s research that helps bring about the policies and support we need.
Elizabeth Kwasnik (left); Hayley Carpenter (right)
The Parkinson’s Action Network’s grassroots advocacy program is run by Hayley Carpenter, Director of Outreach, with the help of Elizabeth Kwasnik, Program Assistant. In a Q&A with Carpenter, we discussed how PAN’s advocacy program is evolving, and how one voice really can make a difference.
Q. What role does grassroots advocacy play in the work PAN does?
Hayley: Advocacy is the core of what PAN does. In 1991, PAN started out as a grassroots organization -- with Parkinson’s advocates reaching out to Members of Congress about the importance of funding research for this disease. That work continues to this day. Without grassroots advocates, there is no PAN.
Q. What are the qualities you look for in an effective grassroots advocate?
Hayley: Effective grassroots leaders are interested in public policy, raising awareness, and seeing an end to this disease. Energy, determination, and enthusiasm for the work are vital to being a successful advocate. Being able to handle adversity is also important – you might not always get the answer you’re looking for from your Member of Congress right away. Persistence in advocating for the interests of the Parkinson’s community and building relationships with Members of Congress and their staff pays off.
Q. Can you share a story of how an advocate (or group of advocates) has made a difference in Parkinson’s-related federal policy?
Hayley: One story that comes to mind is about Corey King, a PAN advocate from Texas, and the Texas delegation’s challenging meeting with a staffer in Senator Kay Bailey Hutchison’s Washington, D.C., office back in February. They came away from the meeting feeling shut down, and not able to have even a brief conversation with the staffer about Parkinson’s disease. King and his colleagues went home with this meeting still on their minds, so King wrote the staffer an email asking what had happened, and whether or not she would be open to future dialogue. The staffer wrote back almost immediately and regretted the way the meeting went, saying it had been a rough week in the Senate. She was glad he’d gotten in touch, and was open to communicating with him about federal policy around Parkinson’s research. And as a result, Hutchison co-sponsored the 2011 Senate resolution designating April as Parkinson’s Awareness Month. This is a really positive step in the right direction of educating our nation’s lawmakers on Parkinson’s disease, and why federal funding and policy support is so important.
Q. Tell us about PAN’s grassroots program and its evolution over the years to where it is today.
Hayley: For approximately the last ten years, the grassroots structure at PAN was the State and Congressional Coordinator Program. Over the last year, with support from a grant from Abbott, PAN staff and a group of thirty PAN grassroots leaders worked to create a new grassroots program. This new program, which we’re rolling out this month, features a lot of different ways to get involved that will ensure volunteers’ experience and aspirations match their desired advocacy roles. Additionally, the program features an online training module, as well as a private website for grassroots leadership.
Q. Why the changes to the program? Is it because of the state of politics and government today?
Hayley: The new grassroots program came about because we wanted to provide a wider variety of roles for current and future advocates to play. We needed to address some of the limitations of the old program, but we also wanted to create a program that is more flexible, nimble, efficient, and provides room for growth. The ever-changing political climate also played a factor in the program’s redesign – we wanted to strengthen our program so that when an important issue arises, grassroots advocates can act quickly to address their Members of Congress and the issues at hand.
Here in PAN’s Washington office, Elizabeth and I work closely with Becca O’Connor, Director of Government Relations, and Catherine Pugh, Program Assistant, on our outreach efforts. This new program makes our work even more seamless and so intensely mission-focused.
Q. So, tell us about the new grassroots structure, and the different roles people can play.
Hayley: Within the new grassroots program, advocates can get involved at four different levels:
e-Advocates receive email Action Alerts from PAN when important issues arise in Congress and in the administration. These Alerts take only a few minutes to complete and advocates’ voices will join thousands of others across the country advocating for better treatments and a cure for Parkinson’s.
For those interested in making a bigger impact, they can volunteer to be an Assistant State Director. Assistant State Directors work with their state’s grassroots leadership, communicate with Members of Congress, and build relationships within their communities.
In select congressional districts across the country, District Delegates serve as the lead contact with their Representative and his/her staff. District Delegates work within their community to build a base of informed e-Advocates, establish a strong relationship with their Representative, and are a point of contact for their State Director and PAN staff.
State Directors work closely with PAN staff to manage their state volunteers and outreach efforts. State Directors lead their state’s advocacy work, oversee grassroots advocates, and serve as the state’s spokesperson on Parkinson’s-related policy issues.
More information about each of these positions is available on the PAN website . And, we’re actively recruiting State Directors in many states across the country. To see if this position is open in your state, click here .
Q. Will you offer training for people who are new to advocacy, or who might need a little help learning more about federal policies related to Parkinson’s disease?
Hayley: One of the features of the new program is that we’ve created an online training module, which anyone can use. It goes over the basics of what PAN’s work in Washington focuses on, and provides a foundation in advocacy. A few of the topics included in the training sessions are: communicating with your Member of Congress; PAN’s legislative issues; how to complete PAN’s Action Alerts; and, how to be a leader in your community. An advocate’s State Director can also be a great resource for learning more about advocacy! Those who are interested in getting involved or in viewing the training sessions, can visit www.parkinsonsaction.org/train .
Q. The next PAN Forum that is open to everyone is in 2013 – what kind of things can advocates expect to learn at the Forum?
Hayley: The PAN Forum is a wonderful event where Parkinson’s advocates from across the country come to Washington, D.C., to learn the latest in public policy issues and scientific research about Parkinson’s. In 2013, we expect approximately 300 advocates to travel to D.C., learn the issues, and meet with their Senators and Representatives. It’s a great event! More information about the 2013 Forum is available on the PAN website . PAN is also planning to host informational webinars and webcasts in 2012, so we encourage folks to sign up on our website  to be notified of these events.
Q. For those who might be intimidated or unsure about becoming an advocate: does one person’s voice really make a difference?
Hayley: Absolutely! One person’s voice does make a difference. Your voice and your personal story are powerful. You can build relationships with a Member of Congress or his/her staff, in your community, and/or with local researchers and clinicians and make a huge difference in awareness and public policy. When thousands of individual voices are combined, the Parkinson’s community cannot be ignored.
Q. If someone wants to become more involved with PAN, who should they contact?
Hayley: Those interested in learning more or becoming involved with PAN, can get started in a variety of ways.
Remember: every voice counts, and PAN is here to provide the tools and support for advocates’ voices to be heard loud and clear in Washington, and effect real change for people living with Parkinson’s.