We seek to increase public and professional understanding of a serious, widespread neurological condition, to provide support to those suffering from the disease, and to support clinical and basic research to discover effective treatments and an eventual cure.
Increasing Public and Professional Understanding of the Disease:
• The Foundation publishes an acclaimed quarterly news magazine, NightWalkers, that is distributed to members and health professionals. This publication contains the latest information concerning the disease and its treatment, updates on current research studies, together with articles from RLS sufferers reporting on their own coping strategies.
• The Executive Director and members of the Foundation's Board of Directors and Scientific and Medical Advisory Board attend numerous professional medical and scientific meetings every year to increase awareness and to create networks of engaged scientists and clinicians.
• The Foundation sponsors monthly webinars that feature leading RLS experts who share information and treatment information to viewers and respond to submitted questions.
Providing Support to Those Suffering From the Disease:
• Articles in the Foundation's news magazine, NightWalkers, provide information and support from others suffering from the disease.
• A network of over 70 volunteer support group leaders and contacts in the US and Canada bring individuals together to share their RLS experiences and discuss coping strategies. Volunteer contacts are available to provide support via phone or email, while support group leaders hold meetings that help build a community of care on which RLS patients and their families can depend.
• The Foundation library of over 30 publications are made available to those seeking information on topics specific to the disease. These materials serve to educate individuals and health care providers about conditions unique to RLS suffers. The Foundation's online Discussion Board provides a safe place online for RLS sufferers to share their stories and hear from others 24/7, no matter where they are located.
Support Basic and Clinical Scientific and Medical Research:
• The RLS Foundation's Research Grant Program is the only one of its kind to exclusively support basic and clinical RLS research. Since 1997, the Foundation has funded close to $1.6 million in competitive research grants. In 2016, the Research Grant Program was reinvigorated to increase funding to $200,000 annually for up to eight pilot grants.
• The Foundation's Scientific and Medical Advisory Board (SMAB) consists of expert researchers and clinicians in the fields of Neurology, Movement Disorders, Sleep Medicine and Research. This group is responsible for monitoring medical and scientific research issues, reviewing the Foundation's vast library of publications, reviewing Research Grant Program applications and advising the Board of Directors on issues of medical or scientific interest and importance.
As the only patient-focused organization that supports individuals with RLS, the scale of the problem may seem overwhelming. However, our strategies are designed to give us a presence larger than may initially appear possible. Our voice is amplified by the work of dedicated volunteers located across the country; we provide them with the information and support for increasing knowledge of RLS in their local communities and states. Additionally, we provide information to those we believe may need to know more about the disease through a program of targeted mailings conducted during the year. Some of those who receive our messages become members, but our primary purpose is to broadly increase awareness. We make ourselves available – and actively solicit – opportunities to speak on radio and TV and through print publications. A staff member is dedicated to maintaining an active presence on social media – Facebook, Twitter, Instagram and others – to reach audiences who depend on electronic communication.
Our full measure of success will be measured only when RLS is well understood to be a treatable, even curable disease. Markers along that path will include:
- Inclusion of information about RLS in medical school curricula,
- Publication of RLS research articles in high quality peer review journals, as well as in treatment guideline applications available to healthcare providers on their smart phones and tablets
- Dedicated funding for research at the national level (National Institutes of Health, Department of Defense)
- Continued expansion of our certified RLS Quality Care Center and RLS Healthcare Provider network
- Yearly continued growth of Foundation memberships
- Active support groups and support contacts in all 50 states
Since 1992, the RLS Foundation has provided over $1.6 million in support of RLS research. These grants have unearthed the first gene variant for RLS, studied the economic burden of RLS, and sought new treatment options, just to name a few. In 2016, in order to reinvigorate this program, the Foundation committed to
- Increase research funding to $200,000 annually for up to eight pilot grants
- Accept grant proposals on a continual basis, rather than just once per year, using the same rigorous review process currently used to evaluate grant proposals
- Provide counsel to RLS Foundation grant seekers to improve the strength and outcomes of their research studies
- Identify potential sources (NIH, DOD) of later-stage funding for grantees
- Expand the reach to biotech and medical technology companies as collaborators that can help achieve progress toward a cure
The RLS Foundation has also committed to a variety of awareness initiatives, like producing a free monthly webinar series, publishing NightWalkers -- a quarterly member magazine – and sending a free monthly e-newsletter to over 17,000 individuals with the most up-to-date information on RLS and Foundation activities.
This past year, the also Foundation published its very first interactive children's booklet, The Adventures of Patty Pillow, as part of the Kids and RLS initiative. The Foundation also updated the RLS Medical Bulletin -- the comprehensive publication for physicians that provides the latest information on the care and management of RLS patients -- as well as the RLS and PLMD in Children and Adolescents brochure.
Additionally, the Foundation hit an enormous milestone this year by surpassing 10,000 likes on Facebook. The Foundation's presence on other social media outlets like Twitter, Instagram, YouTube and Google+ have also grown exponentially, and helped spread awareness to those that may not have known about the Foundation's awareness and education outreach on behalf of the RLS community.
Future goals also include a commitment to expand the RLS Quality Care Center network, strengthen the Foundation's RLS Healthcare Provider Directory, and growing Foundation membership.