Robin Katsaros lives and works in Silicon Valley and is one of PAN’s California Assistant State Directors. She is a loyal, dedicated advocate for Parkinson’s research funding and policy support. Her husband of 28 years, John, was diagnosed with Parkinson’s disease in July 2008, and Robin has since devoted herself to fighting for better treatments and a cure.
PAN interviewed Robin about her advocacy experiences and why the PAN Forum has been an educational resource for her.
PAN: In your opinion, what are the two or three most important things people need to know about Parkinson’s disease?
Robin Katsaros: It’s not a death sentence; there is hope. Yes, it’s frightening when you or a loved one is given a diagnosis. There are a lot of things you will have no control over – but the one thing you do have control over is choosing to make a difference in the fight to find symptomatic help and a cure. Doing so is empowering and takes one’s mind off the sadness of the disease. I believe from the core of my soul that being part of the solution through advocacy is a whole lot better than doing nothing.
PAN: What’s the Parkinson’s community like in northern California?
RK: We are surrounded by a multitude of resources – world-class teaching hospitals, private and government research facilities, a plethora of Parkinson’s caregiving organizations, pioneering institutions like The Parkinson’s Institute, and the headquarters for 23andMe. In other words, there are many places in which I can reach out for help, which also means there are many places I can reach out to help and partner with in getting word out about being a Parkinson’s policy advocate. People in this part of the state (and in the tech business overall) tend to be forward-thinking and open to new ideas, which is good from the standpoint of making connections and getting people involved.
PAN: What drew you to Parkinson’s advocacy and working with PAN?
RK: I attended a Young-Onset Parkinson’s Disease conference within two weeks of John being diagnosed because I figured we needed to learn more about Parkinson’s disease. John and I flew to Atlanta for the weekend conference, and one of the breakout sessions was given by Hayley Carpenter (PAN’s Deputy CEO/Advocacy) and I was completely impressed by what PAN was doing, the team of extremely qualified staff it had assembled, and how the organization was strategic in its mission of being the unified voice of the Parkinson’s community. It resonated personally with me, and was the moment I decided I needed to get involved.
PAN: How do you help educate your community about Parkinson’s disease and the role federal funding plays in research toward better treatments and a cure?
RK: I started a support group for caregivers when John was first diagnosed. That was probably one of the best things I did, and it keeps me in touch with people who want to learn how to be advocates. Through this group I stay connected with a core group of people who support and help one another on an ongoing basis. As often as I can I speak at group meetings; I testified before the California Institute for Regenerative Medicine (CIRM) for a $7 million grant for The Parkinson’s Institute in Sunnyvale, CA. I’ve written articles for our local papers and had letters to the editor published. I use social media to get the message out. I’ve volunteered time with 23andMe. I attend the PAN Forum each year and meet with our elected officials in Washington, D.C. to talk about why Parkinson’s research funding is so important. I’m an Ambassador for The Michael J. Fox Foundation and its Fox Trial Finder program. I’m a recent graduate of the Parkinson’s Disease Foundation PAIR (Parkinson’s Advocates in Research) program. I’ve been in, and advocate for, clinical trial participation. I phone my legislators to give Parkinson’s a voice. And, I’m currently working on an iPhone app for Parkinson’s patients. I do whatever I can to support our community and get us closer to better treatments and a cure.
PAN: Can you tell me about your experiences educating your Members of Congress about the need for federal funding and policy support? Has it been positive?
RK: Yes, by and large it’s been a positive experience. Sometimes it can be frustrating to actually connect and talk to the right people in the various legislative offices. But, once I’m able to reach the right person, the conversation is easy. I try to remember what Hayley said that very first time I was introduced to PAN’s work: phone calls and emails are important to our legislators; hearing from constituents is critical. They need to hear our personal stories. Getting people to make phone calls and send emails to Capitol Hill really can make a difference. Hayley once told me that if a Congressional office receives multiple emails in one day on a specific topic, it can move that issue from the bottom of the pile toward the top.
PAN: Can anyone be an advocate?
RK: Yes, and that’s the beauty of it! You simply need a heart for advocacy. PAN gives you all the tools to make it simple. Can you read? Can you talk? Can you type an email? Then you can advocate!
PAN: What are some of the biggest challenges you have faced as an advocate?
RK: For me, personally, it can get lonely. Sitting at my desk doing outreach and scheduling some of these activities can sometimes feel like it’s just me, all by myself. I wish there were local advocate get-togethers and working sessions; I’m a social being and I get inspired by the energy that is generated when advocates come together. That’s one of the reasons I really like the PAN Forum in Washington, D.C. – the energy is like nothing else I’ve ever experienced!
PAN: How has PAN supported your advocacy work?
RK: Let me count the ways! PAN hosts the PAN Forum every other year in Washington, D.C. where people can learn to become advocates. PAN also provides scholarships to get you there if money is an issue. PAN hosts a dedicated website for grassroots advocate leaders to connect and share ideas.
What I find most helpful, though, is how easy PAN makes everything to do. They send out email Action Alerts (customized for your state’s Senators and Representatives) so that all you have to do is click a few buttons and your Members of Congress will hear from you. They help with press releases, letters to the editor, and op-eds for those who want to use the media as an advocacy tool. Their email alerts and newsletters keep advocates up to date on legislative matters and public policy issues. They provide brochures and fact sheets for support group meetings, visits to doctor’s offices, health fairs, and other venues. And, PAN’s dedicated staff are always willing to help with education or answers to questions. PAN makes being an advocate really easy, no matter what level of involvement or activity you choose.
PAN: Let’s talk about the PAN Forum – why is this important for advocates to attend?
RK: At the PAN Forum, you see the big picture and the community you are part of. Plus, you get to hear presentations from speakers who you would never normally hear from or have access to. Additionally, and maybe most importantly to people who are new to advocacy, PAN staff takes all the “scary” out of meeting with our legislators. The meetings are scheduled by PAN staff so all we have to do is just show up and tell our story – talk about easy! And, it’s so moving. I just can’t explain the feeling of pride and empowerment I felt in my heart on my first visit to Congress when all 300+ of us at the Forum were walking the halls of Congress. It was a sight to behold.
What I really respect and admire about the PAN Forum is that you’re part of a supportive group that gets things done. You learn about the latest policy developments, and you hear from leading scientists about the new medical breakthroughs and trials that they are working on. At the PAN Forum, you’re given huge doses of hope in seeing what is being done to fight this horrible disease. You will connect personally and build relationships with other Parkinson’s and PAN advocates. You will see the community that you are part of. You will hear success stories about what worked and what didn’t in meetings on the Hill or phone calls to Members of Congress. You will laugh, and you will cry, and most of all — you will be changed forever.
PAN: What advice do you have for people in the Parkinson’s community who want to become more involved with PAN?
RK: If you’re in Northern California, please feel free to call me: 650.941.2251 — I mean that! I’d like nothing better than to shepherd you through your advocacy journey and be your mentor and partner in advocating for Parkinson’s research funding and policy support. If you live anywhere else in the country, please call PAN, toll-free, at 1-800-850-4726. They will get you connected, motivated, and started on the path to empowering you to be the best Parkinson’s advocate you can be.
Robin, thank you so much for all the great work you do for PAN on behalf of the Parkinson’s community!
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