December 14, 2021

Support Group Leader and Secretary, RLS Foundation Board of Directors

I recently had the pleasure to sit down and chat with one of the extraordinary members of our Board of Directors, Linda Secretan. Since she became a Foundation member in 1997, she has served the RLS community in so many ways. From starting a support group in Idaho, to serving as the RLS Foundation’s representative on the Sleep Disorders Research Advisory Board of the National Institutes of Health, to her leadership roles on the Foundation’s Board of Directors, she seems to do it all with compassion and a smile. During her six years of service, Secretan has served as secretary of the Board and chair of the Governance and Nomination Committee, two roles critical to the effective functioning of the Foundation.

Linda’s lifelong struggle with RLS and her experience as an educator and life coach make her an invaluable member of the RLS Foundation’s Board of Directors.

Q: How did you get involved with the RLS Foundation’s Board?

A: I was a long-time member of the RLS Foundation and had just moved to Idaho, transitioned careers and had a lot more free time and flexibility. I spent a long time thinking about just the right volunteer commitment where I could best spend my time and resources. Then I realized that the RLS Foundation had been essential to my well-being for many years. I relied on the Foundation for information, encouragement and general support in dealing with my RLS. I noticed that there wasn’t a support group leader in Idaho, so I thought I would apply, and my application was accepted! A generous donor had given the Foundation a grant to create educational materials specifically for kids and adolescents. Since Karla Dzienkowski, executive director at the Foundation, knew of my background in education, she asked me to help out with that project, and I was delighted to volunteer my time and experience with education and RLS. Then I got a call from Karla and Jacci Bainbridge, former chair of the Board, to ask me if I would consider becoming a board member. I was thrilled to be asked. I obviously had to ask questions and think hard about it, but there was no way I could turn them down. It was such an amazing opportunity to grow closer to the organization, learn more and maybe offer more to an organization that had given me so much.

Q: How has joining the Board affected your RLS journey?

A: First of all, it is very exciting to be on the Board, because you tend to hear about things first. You understand what is happening with the Scientific and Medical Advisory Board; when any research reports are published, we are the first to know. The Board is kept updated on all of the advocacy efforts, and that gives me a lot of insight and hope. Being on the Board reminds me that no matter how my own symptoms wax and wane – as they do, no matter how many regimens that I try – there is always a group that has my back. The Board is not just a bunch of names on a piece of paper, but people who are really interested in investing in and improving the lives of people with RLS. Serving on the Board makes my RLS more bearable, brings me hope and keeps the mission front and center in my mind.

Q: How has your service as a support group leader helped you during your time on the Board?

A: I consider myself a patient advocate serving on the Board. My time as a support group leader is so beneficial to my board service, because I have the opportunity to talk to many RLS patients to understand their concerns and their difficulties. I am able to be their advocate in board discussions and decisions that affect the people we serve, our members.

Q: How has your experience as a life coach helped you on the Board?

A: Any good coach begins with the premise that clients are creative, resourceful and whole – always approaching things from an awareness of great humility and curiosity. I think that also makes a good board member. We must be curious and assume the people that we deal with are creative, resourceful and whole, except that they have this interesting but limiting disease. Knowing that we are all sound people, we can make a difference, we can change, and we can learn. Always be curious, because when you are curious you keep your mind open.

Q: You chair the Governance and Nomination Committee. What does that involve?

A: As the Governance Committee, we are guardians of the bylaws. We are charged with making sure that, as a Board, we are doing right by ourselves and adhering to our own principles and standards. The other part of this committee involves nomination. As the Nomination Committee, we are always looking for people who are interested in board service. It is our job to seek out members of the community, Foundation members or individuals with leadership qualities. It takes passionate people to do the work. We have the best executive director in the world, but ultimately the Board is responsible for making some important decisions. We must make decisions about how to spend and allocate the resources available.

Q: What do you look for in a board member?

A: People are surprised to know that not all of our board members actually have RLS. It is not required that you have RLS, but you must have knowledge about the disease and what it means to live with RLS. You need to be willing to commit your time and resources to this important cause. This is a working board. All board members are expected to attend each meeting. In ordinary times, we hold one face-to-face meeting a year and three to four meetings by phone or Zoom. Your financial commitment to the Foundation should be equal to or greater than any of your other charitable giving commitments. One of the key responsibilities for each board member is to thank our major donors, by either phone or letter. When a donor gives a substantial gift to the Foundation, it is important that they get recognition and sincere thanks from a board member. Often, we learn more about the concerns and interests of donors through thank-you calls. This knowledge helps us keep in touch with members and helps inform future board decisions.

Q: Are you currently looking for new board members? How do you find them?

A: We are always looking for new board members; our terms don’t last forever — which is a good thing. We want new people who have new ideas. Several of our current members attended the RLS Symposium held in La Jolla a couple of years ago. It was a great opportunity to meet new people in person with an interest in board service. Sometimes we look at people who have come to us for help, or who have become interested enough to become a donor, and we reach out to see if they may be interested in further service.

When I was considering what to spend my volunteer energy on, I realized that there are many causes that are dear to my heart. Racial justice and climate change are both important issues. I wanted to make a difference in the world, and not just for RLS. I was torn. But, here is the thing: If my RLS isn’t somewhat manageable, then I’m not able to do anything. My RLS wouldn’t be manageable without the support I receive from the Foundation. I wouldn’t know what to do, where to go, how to find information, how to manage my RLS. Once I put that into perspective, there was only one answer. I am only able to volunteer because of the support of this Foundation – the support of this Board – so I darn well better serve this Board and the Foundation, and that’s what made my decision.

Q: Do you have any advice for those who are considering the decision to join the Board?

A: Talk to us! Find out how we operate, find out how you might fit, ask questions. We are open to speaking with you. If we can provide the information that would tip the balance toward your becoming more involved, give us a call.