PATIENT ORGANIZATION HIGHLIGHT
Restless Legs Syndrome Foundation By Karla Dzienkowski, RN, BSN
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symptoms. In July 2021, Mayo Clinic Proceedings he Restless Legs Syndrome Foundation is a published new consensus treatment guidelines to nonprofit 501(c)(3) organization dedicated to inform healthcare providers about best practices in improving the lives of men, women, and children treating RLS. The Foundation has certified eleven who live with this often-devastating disease. The RLS Quality Care Centers to provide individuals with organization’s goals are to increase awareness, improve access to knowledgeable healthcare providers who have treatments, and through research, find a cure. The experience treating mild to severe forms of the disease, Restless Legs Syndrome Foundation is the leading including augmentation. organization for science-based education and patient services for people suffering from restless legs The Foundation’s Public Policy Initiative syndrome. It is also the only organization allows members of the RLS community with a dedicated research grant program to share their own RLS story with to advance promising research their legislators in an effort to leading to new treatments and a increase RLS research funding, cure for RLS. I have high hopes for increased support healthcare provider awareness of RLS, improved and education at the CDC, and Founded in 1992, the Foundation durable treatments, and ultimately, improve access to treatment. has provided over $2 million research leading to the discovery of in support of RLS research. It The RLS Foundation celebrates a cure so that future generations has grown from a small group its 30th Anniversary on June are no longer affected by RLS. of volunteers meeting around a 17, 2022. Looking back to 2002 kitchen table in Raleigh, North when her eleven-year-old daughter Carolina, into a growing organization was newly diagnosed with RLS, RLS with nearly 6,000 members, over 70 Foundation Executive Director Karla volunteers, and a small full-time staff in an Dzienkowski says, “I look forward to the next office located in Austin, Texas. decade in the history of the RLS Foundation. I have RLS was regarded as a “rare” condition when we began, high hopes for increased awareness of RLS, improved and durable treatments, and ultimately, research leading but our understanding of the disease has changed to the discovery of a cure so that future generations are drastically. We now know that the condition is not rare no longer affected by RLS.” at all. RLS affects about 5-10% of adults in Europe and North America; 2-3% with moderate to severe To learn more visit rls.org forms of the condition. ..................................................................................... Karla Dzienkowski, RN, BSN is the LIVING WITH RLS executive director of the Restless Nearly 12 million Americans live with RLS. There Legs Syndrome (RLS) Foundation, a are four FDA-approved treatments for RLS—none patient organization based in Austin, are lifelong therapies. About 1 in 33 Americans – 3 Texas. She became involved with the percent of the US population – has RLS that is severe organization when her young daughter was diagnosed with RLS and has been enough to need daily medical treatment. When all a tireless advocate for RLS research, other treatments have failed, opioids in low total education, and treatment. daily doses are highly effective at alleviating RLS
28 | Winter 2022 | Restless Legs Syndrome
Karla Dzienkowski
