Restless Legs Syndrome Foundation Inc

Membership. The rls foundation serves as a support structure for over 130,000 individuals who, on an annual basis, seek information on rls, either as one who has rls or as one who has a friend or loved one who suffers from the disease. 5,529 members have joined the rls foundation and take advantage of the clearinghouse of services that provide information on latest developments in treatment, counseling and conversation with others who share the affliction. Over 149 medical professionals specializing in the treatment of rls are members of the healthcare provider directory. Member benefits include access to a proprietary collection of educational materials including an rls medical bulletin for healthcare providers, a quarterly news magazine, a monthly e-newsletter, a medical-alert card and access to the members-only section of the rls website. The foundation provides scholarship memberships for those needing assistance, and never turns anyone away seeking information and support. The member website provides visitors with information about rls, treatment guidelines, research advancements, advocacy outreach, discussion panels and links to rls foundation social media sites.

Research. The rlsf supports and funds rls related research projects. During the current fiscal year, 5 research grants were awarded: one grant was awarded for the multi-center longitudinal pilot observational study of the efficacy and tolerability of long-term treatment of rls using opioids (opioid registry), the abnormal cause of limb sensations in rls, sensory dysfunction in a diet-induced iron-deficiency mouse model of rls: characterization and control by dopamine-sensitive spinal gating circuitry, cerebrospinal fluid melanocortin and endorphin in restless legs syndrome related augmentation, and epidural spinal cord stimulation in refractory or augmented restless legs syndrome.

Support groups: the rls foundation supports sixty-one support group leaders, virtual support group leaders and contact volunteers in thirty- six states and canada. Each leader holds at least one in-person meeting per year in their local community. At these meetings, rls foundation educational materials are distributed to attendees. Support group leaders work with a medical advisor that assists the group by presenting on rls topics of interest, suggesting other meeting presenters and overall support to the group. Virtual support groups (vsg), program is an rlsf program that provides four regularly scheduled monthly virtual group meetings to connect and support individuals with rls using video conferencing accessible to all in the rls community. Rlsf educational materials for download are given to vsg attendees. The number of individuals reached through virtual support groups 505, with 295 unique visitors attending multiple meetings throughout the year.