Sarah King is PAN’s State Director – Southern California. She lives in Santa Monica with her husband, Kevin, and is a recent southern California transplant – having just moved there in July. In this interview, Sarah shares what it’s like to rebuild your advocacy network when you move to a new city, how her mother’s living with Parkinson’s inspired her to become active with PAN, and how she looks forward to supporting the Parkinson’s community in her new city.
Sarah King with her mother, Susan Diane Thompson
PAN: How did you come to start working as a volunteer advocate with PAN?
Sarah King: I started working with PAN in November 2011, as an Assistant State Director for New York. My mom had passed away in fall 2010 of complications from Parkinson’s. Throughout her illness I’d fundraised and worked to educate myself on the disease, but I wanted to do more to directly help other families living with Parkinson’s. My husband and I moved to California just a few months ago, in July. It’s quite a change after 13 years in New York!
PAN: How have you started building your network in a new state?
King: Relocating is tough on advocacy work — you really have to start all over. I was able to do a lot of research on resources in Los Angeles in advance of the move, and began connecting with people several months before I arrived. Twitter was particularly helpful for this because it is so easy to find and begin conversations with others in the Parkinson’s disease (PD) community. It’s an incredibly valuable advocacy tool, I think. In fact, I was recently honored to be invited to join the board of the Parkinson’s Association of Los Angeles — this is a relationship that grew out of a connection made on Twitter.
Still, there is a lot that can’t be done until you have moved and are in place, like getting to know the local political climate, developing relationships with your Members of Congress, and participating in local events where you might meet other advocates and potential advocates. I’ve been working on reaching out to PD and aging organizations, local hospitals and neurologists, and support groups to introduce myself and offer myself as a resource. This has been a bit slow-going, but I am beginning to build connections. I’ve also been reading up on my representatives and getting familiar with state and local politics.
PAN: What kinds of things did you do to learn more about PD resources and organizations in the Los Angeles area when you moved there?
King: It can be difficult to find up-to-date information online, or even by phone, about municipal resources and programs. Attending city council meetings and reaching out to the local Department on Aging and city-run senior centers has helped me get a handle on the information and tools that the city and county provide its residents.
When I attend events that aren’t PD-specific, like health fairs, I wear my PAN shirt and carry some PAN brochures and response cards. It works! I’ve had people approach me to ask about PAN and tell me their Parkinson’s story.
Sarah and Kevin King at the 2010 Unity Walk
PAN: What’s the Parkinson’s community like in southern California as compared to New York?
King: The New York City area is home to the Parkinson’s Disease Foundation (PDF), The Michael J. Fox Foundation (MJFF), the Parkinson Alliance/Unity Walk, and the American Parkinson Disease Association (APDA). As a result, there are a lot of educational events for PD patients and caregivers, as well as major fundraising events, and the New York metro area is compact, so there are tons of opportunities to connect with the PD community. Los Angeles is HUGE and resources are really spread out, so there are many communities that lack resources, and when PD events take place it isn’t always easy or convenient for patients and caregivers in other parts of the city to get to them. I want to start focusing on researching those underserved pockets of the city and finding out how I can connect with members of the Parkinson’s community who might need information and support.
PAN: When you look back over the past few years, what are some of your most memorable advocacy moments and successes?
King: Attending this year’s PAN Leadership Forum stands out as my favorite moment to date. Getting to know other advocates was energizing, and we were able to meet with my then-congresswoman, where we learned she has a personal connection to Parkinson’s and got some valuable advice on how to get some of her colleagues on board with our cause. I learned a lot from my fellow advocates and the PAN staff and have been so inspired by everyone’s incredible work.
Parkinson’s Awareness Month 2012 was another highlight. I secured a local proclamation, guest-blogged on advocacy, mobilized my family and friends to action, and more. I look forward to doing much more this coming April to celebrate the month.
I’ve really enjoyed being involved with support groups and hope to do that more often; in fact, I’d like to run a support group for PD caregivers at some point.
Sarah (top row, center) and the New York PAN delegation on Capitol Hill, February 2012
PAN: What has been frustrating or a struggle for you, as an advocate?
King: I am finding recruiting dedicated advocates to be a challenge. I’m learning that it takes more than one “pitch” to get people really invested in the idea of advocacy. I think the idea is initially intimidating. I’m hopeful that when I meet people and talk to them about my work in the PD community I’m a least “planting a seed” that will lead to their involvement down the line, if they’re not able to participate right away. And I’ll keep trying new ways to reach and approach potential advocates.
PAN: Is it important for family members and friends of someone living with Parkinson’s to become advocates?
King: Absolutely! As family members, we have a very important story to tell about what it means to live with Parkinson’s. We can speak to the impact the disease has on someone living with the disease — the physical and mental changes we see in our loved one — and on ourselves as caregivers, and the economic toll the cost of care takes on a family’s finances. We hear again and again from those working on Capitol Hill that an advocate’s story is his or her most important asset, and my hope is that everyone with a Parkinson’s story to tell will do so.
PAN: Do you work with any of the other national Parkinson’s organizations?
King: Back in New York, I helped run an APDA support group for those living with early-onset PD. I participated in the Unity Walk every year, raising funds with the help of family and friends, and attended PDF and MJFF fundraising and educational events.
PAN: When you’re not advocating around Parkinson’s disease issues and policies, what do you like to do with your time?
King: I’m lucky to be able to do Parkinson’s work full time right now, splitting my time between work for PAN and for the Parkinson’s Association of Los Angeles. I also volunteer with the American Cancer Society. In my free time, I love to travel, and my husband and I are really looking forward to exploring California and the western U.S. now that we are out here. The weather here is amazing — I think we’ll be doing a lot of hiking this fall and winter. I enjoy cooking — and the farmer’s markets in Los Angeles are filled with inspiration — and we have a little patio where I’m growing kitchen herbs. We are expecting our first child in March 2013 so we’re going to be very busy with that in the coming months!
PAN: What are your hopes for the future for the Parkinson’s community?
King: I’d love to see all people with Parkinson’s have ready access to a Movement Disorder Specialist. I’d like to see better training for all medical professionals on the care of Parkinson’s patients, and a true understanding of how very differently PD manifests from patient to patient.
I think we are making progress toward a better understanding (among the public as well as health care professionals) of how widespread young-onset PD is, and I hope that will continue. I’ve heard from far too many people with Parkinson’s diagnosed in their 30s and 40s who were initially told by a neurologist that they were “too young” to have PD. We know of course that this isn’t true, and that attitude can delay diagnosis and take a significant emotional toll on the patient and family.
PAN: What advice do you have for people who want to become more involved in advocacy?
King: Start by participating in whatever way is most comfortable to you and employs your skills. Maybe you’re intimidated by the idea of working with the media or meeting with your representatives, but you love to plan events. Start out doing something you know you’ll enjoy, and work toward developing those other skills. Reach out to other advocates for advice — it’s all about pooling knowledge and helping each other.
Also, don’t avoid getting involved because you’re afraid you don’t have enough time — any time you are able to give is needed. Becoming an e-advocate through PAN is a great way to get started and learn more about the issues impacting the PD community.
Sarah, thank you for all the great work you do for the Parkinson’s community!
If you live in southern California and want to get more involved with PAN, you can email Sarah by clicking here.