Restless Legs Syndrome Foundation

“During the fiscal year 2024-2025, the organization amended the by-laws to: - add provision that conflict of interest forms must be resubmitted at beginning of a new term or if the board member makes changes that require disclosure. - define membership of executive committee and note that executive director ordinarily meets with the committee but may be excluded during executive session. Chair may add up to 3 non-officer board members to the committee. - clarify and to some extent limit the powers of the executive committee. - explain duties of the g&n committee. - describe duties of the vice chair, including presumption concerning election as new chair. - call for evaluation of performance of executive director at least annually.”

“A draft of the form 990 is reviewed by the finance committee with the preparing cpa. After the finance committee reviews and changes are made, an updated copy is sent to the full board before filing.”

“Annual review of rlsf written conflicts of interest policy with members of board; review with members of board of rlsf policy, signing of conflicts documentation, and disclosure of any conflicts of interest.”

“Executive committee obtains compensation data for comparably sized organizations operating within comparably sized geographic areas. The committee reviews this data and compares it to compensation for the executive director in making its determination that the salary is reasonable. The compensation is part of the overall budget approved by the entire board. The deliberation process is documented in the minutes of the board.”

“Mississippi, new hampshire, new jersey, new mexico, new york, north carolina, oregon, pennsylvania, rhode island, south carolina, tennessee, utah, virginia, west virginia, wisconsin”

“Governing documents are available to the public upon request. Audited financial statements and annual report are posted to www.rls.org website and available for inspection. Irs form 990 is available upon request and other publicly available websites.”

“The corporation is organized to increase scientific and public understanding of restless legs syndrome or rls, to encourage and provide funding for research leading to treatments and cure for the disease, to provide support to those suffering from the disease, to be the leading center for information on all aspects of the disease, and to carry on such other activities related to the disease, its treatments and cure, as may be designated by the board from time to time.”

“Educational. Providing trusted, unbiased information about restless leg syndrome to individuals and healthcare providers through publications, webinars, a website, social media sites, and direct communications. Publications include: a general informational brochure on rls and rls and plmd in children and adolescents; rls guide for teens, rls guide for children, twenty-four different handouts on rls specific topics directed towards patients; a quarterly news magazine; monthly online e-newsletter; two specialty brochures directed to healthcare providers; and a medical bulletin issued as developments merit. During this fiscal year, nine webinars on rls-related topics were offered to the public. Over 1200 registrants viewed these webinars. The 12-part educational physician webinar series was open to physicians, nurse practitioners and physician assistants to enhance clinical knowledge regarding diagnosis, treatment and management of rls patients. This webinar series is available on demand. The organization's website www.rls.org attracts over 640,000 online visitors that generate over 27,900,00 page views each year. The rls facebook page has 14,595 supporters and participants. The rlsf blog has received over 1,878,417 page views and the rls foundation youtube channel has received over 271.5k views. The foundation executes a public policy initiative program whose goals are to raise awareness and provide education around three specific areas: what is rls and how many are affected; the need for increased medical research funding; and the need for access to appropriate treatment for individuals with rls.”

“Membership. The rls foundation serves as a support structure for over 640,000 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. 5,400 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 160 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, five 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), defective transferrin receptor regulation in the blood- brain barrier endothelial cells underlies brain iron insufficiency in rls, proteomic approach to understanding the mechanism of action for exercise as a non-pharmacological management method in rls : a pilot study, cerebrospinal fluid melanocortin and endorphin in restless legs syndrome- related augmentation, and involvement of calcitonin gene-related peptide (cgrp) in restless legs syndrome (rls): cerebrospinal fluid proteomics analysis.”

“Support groups: the rls foundation supports sixty-one support group leaders, virtual support group leaders and contact volunteers in twenty-one 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 may work with a medical speaker to present on rls topics of interest. Local support group leaders suggest other meeting presenters and facilitate conversations that provide 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 400+, with over 300 unique visitors attending multiple meetings throughout the year.”

“Rlsf sends mass mailings that include a purpose of responding to calls to action to advance elements of its mission. As such, audiences are chosen for their likelihood to respond to and benefit from these calls to action- not solely for their likelihood to provide financial support-and the mail includes a significant level of program content needed to fulfill such calls to action. According to the national sleep foundation, as many as 25 million adult americans, 10% of the adult population, may suffer from rls, yet only a tiny fraction has been properly diagnosed and sought treatment. However, a majority of the rlsf audience--which includes members, former members, and non-members--share an intimate connection to this highly underdiagnosed disease: as patients themselves, and as family members and caregivers to rls patients. Thus, it is in service to our mission that the rlsf mailings (1) alert and educate this audience to new developments and treatments in an effort to promote their own improved health, (2) ask them to alert their practitioners as well as family and friends to spread awareness and improve diagnosis and access to treatment for some of the millions of suspected undiagnosed cases, and (3) asks them, when appropriate, to advocate with government policy makers for access to necessary treatment and therapies and for a commitment to research that will further the mission. While each mailing usually contains some fundraising content and a small segment of each audience--typically less than 10%--is likely to donate, most of the letters' content supports our calls to action to improve the health of the audience through education and self-awareness, to spread word of rls advances to others, and to advocate for policy advancing the mission. Accordingly, we believe rlsf mass mailings that reflect the purposes and calls-to-action, audience selection criteria, and content related to purpose as described above meet the standards for joint cost allocation of non-profit organization expenses set forth in the american institute of certified public accountants (aicpa) statement of position 98-2, and, in accordance with the financial accounting standards board (fasb) guidelines, we divide our direct mail costs between program services and fundraising.”