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.

Thank You from Our Executive Director

As we plan for the season of giving thanks and gathering with family and friends, I want to be the first to thank each of you for your loyal support to the RLS Foundation. Your gifts have allowed a once tiny organization of a committed group of volunteers to grow and become the voice of the RLS community for 25 years.

We value our relationship with you, and want you to know that the RLS Foundation is here when you need us. As a nonprofit organization, our priority is clear: to support and serve the RLS community. Through our network of resources, you can remain connected to people who care and can relate to your concerns.

• Our online Discussion Board and blog, as well as our social media outlets ( Facebook, Twitter, Instagram and others) provide instant connection to others.
• Our staff is here to help you with a listening ear and informational materials, and can help identify RLS providers in your community and at certified RLS Quality Care Centers.
• Our network of volunteers are there to support you via phone or email, and through comforting and informational support group meetings.

On November 28, we hope you will join us on #GivingTuesday, the global celebration of giving. Membership is the lifeblood of our organization, and allows for us to provide integral resources to everyone suffering from this often-misunderstood disease. Your $35 each year directly strengthens our programs, including sponsoring research, producing educational events and materials, maintaining support groups, and providing assistance online.

Considering membership but haven't taken action? Know someone that would benefit from membership? Want to give the gift of membership to someone in need? Take action so we can reach our goal of 25 NEW Foundation members by the end of #GivingTuesday!

Your support makes a real difference in the lives of individuals living with RLS and their families.

Sincerely,

Karla Dzienkowski, RN, BSN

Executive Director

RLS Foundation Forges Relationship with UT School of Nursing

On May 17, Executive Director Karla Dzienkowski, RN, BSN, spoke at The University of Texas at Austin's School of Nursing, her own alumni. The school was recently awarded a grant by the National Institutes of Health (NIH) to study restless legs syndrome as a potential cause of restlessness in Alzheimer's patients. Karla congratulated Dr. Kathy Richards and her team on the award, and extended a hand on behalf of the RLS Foundation to support the research endeavor.

“Speaking to the research team was an incredible opportunity to enhance the RLS Foundation’s mission of awareness and education of the disease, as well as to support research that will bring focus on proper diagnosis and treatment of RLS in cognitively impaired seniors," Karla said. "Accurate diagnosis of RLS in cognitively seniors will lead to effective treatment management, improved daily function and overall quality of life.”

Karla distributed informational packets to Dr. Richards and her researchers to deepen their understanding of the disease and available treatment options. In total, Karla gave a 45 minutes presentation followed by a 15 minute question and answer period. Karla and staff also attended a presentation on RLS given by Dr. Donald Bliwise, a healthcare provider from Emory Sleep Center, one of the Foundation's 11 certified RLS Quality Care Centers.

“Cognitively impaired seniors with RLS may have difficulty expressing RLS symptoms causing an inability to sit or lie still during the evening or nighttime hours," Karla said. "This study will ensure senior with cognitive impairments are accurately diagnosed and receive proper treatment to manage their RLS symptoms.”

Dr. Richards is a co-investigator, along with Christine Kovach from The University of Wisconsin-Milwaukee, on the grant "Nighttime Agitation and Restless Legs Syndrome in People with Alzheimer’s Disease." This is a $3.9 million, five year award funded by the National Institute on Aging. Dr. Richards, Kovach and the research team will use the new tool they developed and validated, the Behavioral Indicators Test - Restless Legs.

Karla Dzienkowski Celebrates Three Years at Foundation

This year Karla Dzienkowski, RN, BSN, celebrates her third year as executive director of the RLS Foundation. Since taking on the role, Karla has brought the Foundation into a new era, developing programs and nurturing relationships that make significant strides in spreading awareness, providing support, and finding a cure for RLS.

Karla first began her relationship with the Foundation in the early 2000s, becoming a member and supporter of the Foundation after her daughter was diagnosed with severe RLS. As soon as she finally heard the diagnosis, Karla set three goals for her daughter: 1) To become knowledgeable about the disease, 2) to learn how to manage her symptoms, and 3) to advocate for herself. Fortunately, the RLS Foundation provided information to get the help that she and her family needed. Even today as executive director, Karla has made it a personal goal to support children impacted by RLS, developing publications so that kids can better understand this disease and take charge of their symptoms.

Eventually, Karla served for six years as a member of the Foundation's Board of Directors. Karla spent several months in Rochester, Minnesota, the Foundation headquarters, to train and transfer knowledge from the retiring staff to the newly recruited staff. The new and old team packed up the office for relocation, and Karla and her husband then drove a moving truck over 1,000 miles to the Foundation's new home in Austin, Texas.

Karla is a registered nurse, and has extensive nonprofit and volunteer experience. In addition to her years on the Foundation's Board of Directors, Dzienkowski also served as board president of an Austin, Texas chapter of the National Charity League, Inc., a mother-daughter philanthropic organization committed to community service, leadership development and cultural experiences. Karla has a passion for cooking (keeping everyone at the Foundation office well-fed!) and is a dedicated Pittsburgh Steelers football fan and eternal optimist. She spent many years as a school nurse while her daughters were in school, but her role as mother and wife have always been her first priority. She works tirelessly for the Foundation because Karla is truly dedicated to its mission.

"Karla possesses an energy that radiates throughout the office and infects us all," Membership Coordinator Faith Duncan says. "She leads a trifecta of boards, constituents and staff, and does so with relative ease. One might find it difficult to manage business executives, renowned physicians, Foundation staff & RLS sufferers (each requiring a different 'touch'), but Karla quite competently wears many hats and accomplishes this like a true champ."

Karla's drive to find a cure, in addition to her personal experience with RLS, is what makes her a distinguished leader who inspires all she works with. She is selfless, consistently leading with extreme dedication and passion, and always puts her constituents first. When any person calls or writes in with stories of frustration, often at wit’s end, Karla takes the time to reach out to each individual, listen with sincere compassion, and assist them in outlining steps to a solution.

Meet Karla Dzienkowski, RN, BSN:

Executive Director

In January 2014, Karla accepted the position of executive director. In two and a half short years she has made a huge impact on this organization.

Karla first learned about RLS in her dual roles as a mother and registered nurse when her daughter, then 11 1/2 years old, began to experience symptoms that doctors could not explain. Karla crossed the country looking for answers before finally finding a knowledgeable doctor, and shortly after, the RLS Foundation.

Eager for answers, Karla joined the Foundation’s Board of Directors in 2004 and served through 2009. As a board member, she encouraged pediatric RLS research, along with programs to increase awareness and education of RLS in the medical and school communities. Karla believes that much work has yet to be done in disseminating information about RLS to the public and the medical community, and that much more research into its cause and treatment is needed. Karla drives the mission of the Foundation with her leadership, and she is passionate about promoting research for better treatments and a cure.

Karla explains “The RLS Foundation serves as a beacon of hope, help and support for individuals and their families who deal with the daily impact that RLS has on their life. I want to thank each of our members for supporting the Foundation because you gave me and my family a life-line when we desperately needed one. With the help of the Foundation we were able to find the care my daughter needed and get back to living life.”

Karla has vast experience working with non-profits, including active participation for many years in Girl Scouts, Austin Children's Museum and three years serving on the Board of Directors for National Charity League, Inc., with one year as board president of the Capital of Texas Chapter. Karla, her husband, John, and their two daughters have recently welcomed a new Alaskan Klee-Kai puppy named Arrow into the family.

Karla is truly the Foundation’s #1 cheerleader. She always responds to difficult inquiries that come to the Foundation with genuine empathy, support and deep knowledge of RLS, drawn from her roles both as a family member impacted by the disease and as a nurse with over 30 years of medical knowledge and experience.

We recently received this note to Karla from someone with whom she was corresponding: “I also thank you for the empathetic warmth of your email. As you know, people in my situation feel very stressed and suffer from social isolation. It means a lot to feel contact with someone who understands. I think your organization is very blessed to have someone like you working in your position. I hope they appreciate you!”

Do we appreciate Karla? … Beyond measure!