February 8, 2023

Interview with a Legend: Pickett Guthrie

By Clara Schlemeyer, Program Coordinator, RLS Foundation

Pickett Guthrie was asked to share with our members some of her memories about starting the Foundation and her thoughts on where we are now and where we are headed. Guthrie was the Foundation’s first executive director and continues to be one of our biggest supporters. She received the Ekbom Award, with deep appreciation of meritorious service, in 2008.

Q: How did you first get involved with the RLS Foundation?

A: I am the middle cog among three generations who suffered with RLS; my father had RLS (but, of course, back then no one knew what it was), and my daughters also have it. I was stubborn. I had a very demanding job, but I couldn’t sleep. As I tried to get help from my general practitioner, he finally remembered that my father had complained about the same condition. My internist sent me to the medical school at Duke University because he didn’t know what to do for me. Eventually, someone in the Neurology Department at Duke admitted that he did know what it was, but he did not have a clue about how to treat it. Eventually, I went to the National Organization for Rare Disorders in Washington, D.C., where they had received other inquiries about RLS.

About that time, Oron Hawley and Virginia Wilson were also looking for answers about their own suffering and started exchanging letters to share information. That is when Oron, at age 90-plus, started a very simple newsletter about RLS and wanted to start a support group for sufferers as well.

Oron really does deserve most of the credit. Although he did not have a severe case of RLS, it made him mad that it was so difficult to find treatment. So, he and Virginia decided to have a small support group, just the two of them! Virginia was really a go-getter type of person, so I started chatting on the phone with Virginia. It is hard to imagine now, but this was a time before computers and the internet enabled people to make connections.

I joined the small support group, but really, a support group in and of itself does not have much credibility. I was working for a very large law firm, and I was told that in order to have any credibility we needed to form a significant organization. Since I had the knowledge and the ability to deal with the legal requirements, I filed for incorporation, formed a board of directors, filed for 501(c)(3) status and created the Restless Legs Syndrome Foundation. We were up and running all at once!

It was a unique group of people who decided that we were going to try to do something, not just sit and let life happen. Those were very exciting years, because initially we were told that there weren’t many people with this obscure disease – that RLS is a rare disorder. I attended the national meeting of the Council on Rare Disorders in Washington, D.C., and discovered that RLS is not a rare disorder.

Q: What were some of the guiding principles that helped you as the first executive director of the RLS Foundation?

A: The most important function of the Foundation, ironically, was to listen to our members. People with RLS just needed to be heard, and they needed to know that RLS is a real, not so rare, disease. They needed to be directed to legitimate medical information. I think the Foundation has always stood for that, for providing information that you could trust. Over the years, the Foundation has built that reputation for truth and transparency, sharing confirmed medical information from RLS experts. We were trying not to frighten people but to reassure them and give them hope.

It was important that we build credibility among medical professionals. We went to our first meetings at SLEEP and the American Academy of Neurology to show that we were a professional organization, and that restless legs syndrome was not a joke but a legitimate, common disease that needed attention and required medical treatment.

Q: What is your best memory with the RLS Foundation?

A: That very first SLEEP meeting, it was heady stuff! Here we were, three determined people trying to get the word out about RLS, and the Foundation was still operating out of my dining room with material spread out on the dining room table. Nobody knew that we didn’t have an actual office and that I wasn’t even receiving a salary. So, we had to fake it. We just had to take a deep breath and act as though we were just as legitimate as anybody else there. That was exciting!

Q: What do you want your legacy to be?

A: From the beginning, we formed the Foundation to help other people with RLS. And, as the Foundation has grown, that is still the focus: to help those with RLS through education, resources and research to find a cure. Initially, when we got calls from people suffering from RLS, about all we could do was to hold their hands and offer a compassionate ear. But now there is significant help available in terms of resources, webinars, support groups and advocacy opportunities, and it’s very satisfying. I am proud to have been the first executive director, but I never could have done it without so many people who rolled up their sleeves to help, whether they had any previous professional experience or not. Most of our first board members had no experience serving on a board of directors, but they were willing to serve on the RLS Foundation’s board because that’s what was needed to form a Foundation.

Q: Where do you hope to see the Foundation in the next 30 years?

A: Of course, we would all like to unlock the mystery of RLS and find a cure. I am so proud to see that the RLS Foundation is now a major player in the world of sleep professionals, so the success of this organization is significant. Even though we don’t yet have a cure for RLS, I would love to see RLS have less impact on the quality of life of people who suffer from it. That means finding better treatments that will allow those with RLS to live full and happy lives. Tragically, suicide is a real issue for some people with RLS.

We know now that RLS can be diagnosed and treated effectively. Although the Foundation has made great progress in educating the public about RLS, there are still people who have trouble finding a healthcare provider who can help them manage their disease. There will always be a need for the Foundation. Better education and information, and not just fewer desperate people, would be a simple way to put our goals. I would like to see the primary care doctors and specialists treating patients with RLS send them to the RLS Foundation for reliable information and compassionate support.

In my day, people wound up at the Foundation in desperation, when their healthcare providers had no answers for them. It is my hope that in the next 30 years we can provide hope and education to RLS patients by connecting them with an RLS specialist who can help them manage their disease, so that it doesn’t destroy their lives. The general public must understand that RLS affects every aspect of a person’s life in such a profound way, because it robs them of the ability to sleep or even to rest. Members of the RLS Foundation understand the devastating impact that RLS has on quality of life and can support each other to minimize that impact.