History of the Restless Legs Syndrome Foundation

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Chapter 38 History of the Restless Legs Syndrome Foundation

Never doubt that a group of thoughtful committed citizens can change the world; indeed, it’s the only thing that ever has.

Margaret Mead

In the 1940s, a Swedish neurologist named Karl Axel Ekbom began publishing numerous scientific articles on restless legs syndrome (RLS), coining that name in 1945.¹ But persons with RLS continued to suffer alone, for the condition was little known and rarely mentioned. Their only opportunity to connect with other patients was through the National Organization of Rare Disorders (NORD), where individuals with rare conditions turned to learn more about their disorder and to connect with others through a patient database.

In 1989, a 90-year-old Californian named Oron Hawley changed the history of RLS by requesting the names of others with this strangely named disorder through the NORD patient database. Although his own case was mild, Oron began exchanging letters with eight other individuals with RLS. These letters offered hope and understanding, shared coping methods and therapies, and evolved into what is now the quarterly newsletter Nightwalkers.

Medical understanding on how to diagnose and treat the condition was so limited that individuals would contact the impromptu RLS Support Group with questions about medications. Although Oron remained clear about not dispensing medical advice, the group realized that many physicians (and even trained specialists) were ignorant about RLS. Hawley related a story in the winter of 1991 issue of NightWalkers that captured both the sense of humor and frustration shared by most RLS-affected individuals:

This reminds me of the story about a farmer who had a sick mule. He knew a neighbor who also had a sick mule and inquired of him one day “What did you give your mule?” “Kerosene,” replied the neighbor. A few days went by and he was with the neighbor again. “ That kerosene killed my mule,” the farmer exclaimed. “Yep. Killed mine, too,” replied the neighbor.

From the beginning, teamwork charted the foundation on its course. One of Oron’s eight original correspondents was Virginia Wilson, an 80-year-old dynamo from Florida, who designed a query sheet to record medical history and family background as a requirement for receiving the RLS Foundation (RLSF)’s newsletter. Herself a writer, Virginia eventually took over editing NightWalkers and enlisted North Carolinian Pickett Guthrie to create a framework that would transform Oron’s support group into an official organization. Moving the “office” (actually just cardboard boxes filled with past newsletters, addresses, and copies of early correspondence) from Florida to Pickett’s dining room table in North Carolina freed Virginia to begin composing early chapters of what would become the book Sleep Thief, Restless Legs Syndrome.

Three short years after Oron first contacted NORD, this fledgling support group became the RLSF when articles of incorporation were filed in North Carolina. The RLSF obtained nonprofit 501(c)(3) status in January 1993 and began building funds to support medical research aimed at unraveling the mystery of RLS.

Another critical advance in the RLSF’s history came through the interest of several neurologists—Drs. Arthur Walters, Wayne Hening, and Sudhansu Chokroverty had been observing and treating a group of patients with strange leg discomfort that forced them to walk the floor sleeplessly at night. Mutual needs were met when these researchers found an enthusiastic patient sample and the RLSF initiated a long-standing liaison with the medical and research community though creation of its Medical Advisory Board in 1993. Dr. Walters served as the initial chairman of the group.

From the beginning, everyone involved with the RLSF focused on reaching out to others with the condition and educating physicians. RLSF’s early goals, as stated in its first published brochure in 1993, were to

• Advance research on RLS and related sleep disorders

• Aid victims and their families to understand RLS and to find appropriate help

• Alert primary physicians to recognize RLS and prescribe proper treatment

• Inform the general public through mass media that RLS is a physical disorder damaging the physical, social, and familial lives of its victims

In 1994, two other events propelled the RLSF onto the national scene. First came a request from the American Sleep Disorders Association to organize the first scientific symposium on RLS for the 1994 meeting of the Associated Professional Sleep Societies. Dr. Richard P. Allen, co-director of the Johns Hopkins Sleep Disorders Center, chaired this landmark event, which included Dr. Walters, Dr. Hening, Dr. Jacques Montplaisir, and Dr. Christopher Earley, all of whom would continue to lead the way in advancing research on RLS, assisting the RLSF to promote awareness of the condition, and educating physicians on the best available treatments.

Later that same year, Modern Maturity published an article on RLS entitled “ The Most Common Disorder You May Never Have Heard Of” by syndicated columnist and RLSF board member Robert H. Yoakum. Alerted in advance that Yoakum’s article might generate a large response, Pickett Guthrie moved the RLSF’s stash of cardboard boxes from her home into a one-room office. Using volunteers and a single paid employee to open what would prove to be a 40,000-letter avalanche, the RLSF responded to every letter writer with a brochure describing RLS and requesting a small contribution in exchange for the NightWalkers newsletter. Yoakum had hit just the right balance of humor and pathos to capture public attention and encourage RLS sufferers that their condition was real and treatable. In addition, the RLSF had identified a solid base of sustainable growth through member contributions.

Support Groups

Juanita Therrell, another founding member of the RLSF, had her own personal vision—to educate her home state of Washington about RLS. She began this quest with an article about her 20-year experience with RLS that was published in the Seattle Times on October 26, 1993. Picked up by the wire and reprinted in 35 states and Canada, this article opened the door to contacts with many others with the condition. Several months later, Juanita organized the first RLS support group and was amazed to see 70 people crowding into the meeting room, hungry for information. By the end of that year, eight additional support groups had been launched in locations ranging from Washington State to Florida. Today, due in part to these strong underpinnings, there are currently over 100 active support groups in the United States and seven in Canada. There are also strong but less formal relationships with RLS groups in 10 other countries around the world. In December 2003, these groups convened for the first time in Munich, Germany, for an international RLS patient summit. Plans are in place to continue the communication and cooperation among these groups with diverse geography but common interest.

Patient Education

Undoubtedly one of the greatest avenues of the RLSF’s mission is that of patient education. Each quarter, the NightWalkers newsletter updates RLSF members on Foundation news and information surrounding RLS in general—its pages are filled with articles on research, awareness, and treatments to help RLS readers at various stages in coping with their disease. In addition, readers can view a current list of RLS support groups, receive information about RLS education meetings, and read about others’ experiences in living with RLS. The newsletter provides regular features like “Bedtime Stories,” which features contributions from readers; “In the News,” which presents readers with details about current research being conducted on RLS; “Ask the Doctor,” which gives patients an opportunity to ask physicians about questions related to RLS; and other articles designed to present them with the latest news related to RLS.

In addition to NightWalkers, members of the RLSF have access to a variety of other publications. One of the most popular is the recently improved Living With Restless Legs Syndrome, a patient-oriented booklet that includes information on RLS diagnosis, treatment options, healthy lifestyle tips, and a sleep diary.

Patients also have the opportunity to attend the RLSF’s regional meetings held at a different location around the United States each year. These meetings feature a variety of speakers and sessions and allow those who have RLS to receive education about current RLS therapies and research, as well as helping them to not feel alone.

The RLSF also features a health care provider directory. This is an extensive list of physicians who have expressed interest or previous experience in treating patients with RLS.

Physician Education

Education of physicians and other health care providers is one of the core programs of the RLSF. Over the past years, Foundation staff have attended medical association national meetings and sponsored continuing medical education symposia to education providers about RLS diagnoses of treatment options.

Health care provider–focused written materials include the RLS Medical Bulletin, a diagnosis-related CD-ROM, and specialty treatment situations (Children and RLS, Depression and RLS, Pregnancy and RLS, and Surgery and RLS). All materials are distributed free of charge.

In late 2004, the RLSF unveiled its Healthcare Provider Membership (HCP) program. This new membership provides health care providers with a subscription to the new RLS Scientific Bulletin. Providers also have access to a variety of publications free of charge, including PowerPoint presentations, a secure health care provider discussion board, and copies of the RLSF’s brochures for display in their office.

Research

In the 16 years since the RLSF’s modest beginnings, interest in research has grown immensely. From the first, research has been an important part of the RLSF’s mission and vision for the future.

The need to document the complexities of this condition and to interest researchers in finding answers became a core activity of the volunteer group. One of their first activities was to send out a two-page survey to those on the mailing list asking information about age, geographic location, ethnicity, medications, exercise, surgeries, and possible triggers such as foods and alcohol. Oron Hawley stressed the importance of 100% participation in the effort in NightWalkers when he wrote, “so that we can recap information and be prepared for any avenue of research that may open.”

In 1997, under the guidance of board member Robert Waterman Jr., the RLSF created a Scientific Advisory Board (SAB) to give counsel and direction to the organization’s effort to foster research on RLS. Board member Waterman chaired the SAB. One of his first tasks was to organize a meeting with members of the National Academy of Sciences in Washington, DC. Conference attendees reviewed the known facts about RLS and discussed how to proceed in searching for cause, optimal treatment, and cure.

The first grant funded by the RLSF (1997-1998) was a 2-year fellowship award to Dr. William Bara-Jimenez at the National Institute of Neurological Disorders and Stroke. Next, the newly formed SAB developed guidelines for the types of research the RLSF was actively seeking. These guidelines laid the groundwork for the first competitive grants funded by the RLSF. Since 1997, a total of 28 grants totaling $1.2 million have been awarded.

In addition, the RLSF has formed a collaborative working relationship with the National Institutes of Health (NIH). This is due to the hard work of many people, but none more so than Robert “Bob” Balkam. Strategically located in Washington, DC, Bob Balkam set the goal of promoting RLS as a research priority in the appropriate NIH institutes and specialty centers.

Several Foundation-funded researchers have gone on to receive grants from the NIH, whereas others have been able to continue their study of RLS. RLSF-funded researchers have produced an extensive volume of exciting work that continues today and that is presented in various chapters of this book.

Awareness

Kate Styer is one of many people who found help on the RLS website (www.rls.org) when her symptoms started keeping her awake. “I would go for hours and hours moving my legs, or tensing them up so that I could get some relief. This period of sleepless nights was so frustrating.” Then Kate overheard a family member talking about “restless legs syndrome.” “She described my situation to a tee. I almost jumped up and down with glee. When we returned home, I got online and Googled ‘Restless Legs Syndrome.’ I read the RLSF site with my jaw hanging open.”

When redesigning the website in March 2004, the goal was to communicate important information about RLS in an appealing and reader-friendly format so visitors could maneuver easily through the pages. Enhancements included more communication tools for users, easier access to publications, enhanced features to help visitors find a support group or local RLS health care provider, information in other languages, and an improved system for making donations and renewing memberships. The newly designed site definitely accomplished these goals. After the improvements, the site saw 2 million more hits than it had the previous quarter.

The website is only one of the ways that the Foundation continues to strive to improve awareness. RLS Awareness Week is another. To address the continuing need for patient and physician education, the RLSF established the first RLS Awareness Week in 2004. The week incorporates the birth date (September 23) of the first physician to describe RLS as a medical condition in the mid-1940s, Dr. Karl Axel Ekbom of Sweden. Because RLS is a neurologic disorder with a profound impact on sleep, the RLSF takes the opportunity to tie into activities taking place during both Brain Awareness Week and Sleep Awareness Week.

A third avenue of RLS is through media outlets. RLS has been featured in various national publications, and each time, it becomes increasingly evident how many people are living with RLS. A prime example of this was a column featured in “Dear Abby.” A reader wrote in to discuss her husband’s “restless legs.” His constant movement was keeping her awake and causing her to consider moving to a different bed. Abby’s response included listing the possible cause of his syndrome as “restless legs syndrome.” She also listed www.rls.org as a source for information. The RLSF’s website had been averaging about 2000 visitors a day, but on October 2, the day the column ran, the site had more than 15,000 visitors! The monthly total was nearly triple that for September of previous years.

“Dear Abby ” is only one example of the many media avenues that have helped aid the quest for RSL awareness. From Good Morning America to MSNBC, RLS continues to gain more and more attention from people all over the country and the world.