History of the Restless Legs Syndrome Foundation

Chapter 38 History of the Restless Legs Syndrome Foundation

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:

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

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

Related posts:

Clinical Science of Restless Legs Syndrome Introduction: Comorbid Disorders and Special Populations Restless Legs Syndrome as a Movement Disorder Restless Legs Syndrome in Neurological Disorders Spinal Cord, Dopamine, Opiates, and Restless Legs Syndrome Restless Legs Syndrome Morbidity: Sleep and Quality of Life

Restless Legs Syndrome