Restless Legs Syndrome Foundation Blog

Reviewing the Year's Accomplishments

Throughout 2017, with the invaluable support of Foundation members, the Board of Directors, and the Scientific and Medical Advisory Board (SMAB), the RLS Foundation was able to take significant strides on behalf of the RLS community. None of our work would be possible without these passionate individuals, and we thank each and every one of you for the steps you take alongside us. Whether you are sharing a copy of NightWalkers with your friend, distributing Foundation materials among your local medical community, attending an RLS Foundation support group, providing feedback to others on our Discussion Board, sharing Foundation content on Facebook, or simply paying your annual membership dues, YOU are helping us in the fight towards a cure for RLS.

Because of this unwavering support, here are some highlights from 2017 that you made possible:

The RLS Foundation Turned 25! June 17, 2017, marked the 25 year anniversary of the RLS Foundation. In celebration of this milestone, we reduced Foundation membership to $25 for the day, and made the Member Portal open to the public for 24 hours.

Public Service Announcements. The RLS Foundation produced seven RLS public service announcements that were aired on local channels in Texas, and are widely available on our YouTube channel and Facebook page. (Share them with your online network, and let others know that they are not alone!)

11th RLS Quality Care Center Certified. In January 2017, Massachusetts General Hospital joined the Foundation's Quality Care Center Network. QCCs are renowned for outstanding performance in the field and staffed by leading RLS specialists who provide expert care and specialized disease management. Read the press release here.

2017 SLEEP Meeting. This annual meeting, hosted by the Associated Professional Sleep Societies LLC (APSS), is a three-day conference that brings together the best and the brightest clinicians and researchers in sleep medicine. It is the leading world forum to present and discuss the latest updates in the field - and the RLS Foundation was there to give the RLS community a seat at the table for the second year in a row. Click here to read more about highlights from the conference.

Updated Medical Bulletin. The RLS Foundation's Medical Bulletin is a comprehensive bulletin for physicians that provides the latest information for the care and management of RLS patients. In 2017, Dr. Brian Koo of Yale Centers for Restless Legs Syndrome, an RLS Quality Care Center, and other contributors from our SMAB updated this publication to include information on augmentation for healthcare providers. Become a Foundation member to receive your copy!

Funded RLS Studies. The Foundation's Research Grant Program funded two groundbreaking RLS studies in 2017:

1. $37,000 grant to William G. Ondo, MD, of Houston Methodist Neurological Institute (an RLS Quality Care Center) to study a new medicine to treat RLS patients who have augmentation
2. $144,000 two-year grant to John Winkelman, MD, PhD, of Harvard Medical School, for a "Multi-center Longitudinal Pilot Observational Study of Efficacy and Tolerability of Long-term Treatment of Restless Legs Syndrome Using Opioids"

Advocacy. In December 2017, the RLS Foundation kicked off to educate the public, regulatory authorities and elected officials in Washington about the appropriate use of opioid therapy for refractory cases of RLS. Partnering with the Health and Medicine Counsel of Washington (HMCW), we produced a special bonus webinar, "Effective Advocacy and Policy Implications from the Opioid Crisis." In 2018, we will continue to work with HMCW to give the RLS community a voice in Washington. Want to help us take action? Visit our website to learn more and register to join us for the call to action webinar on April 16th, 2018.

Awards. At the end of 2017, the RLS Foundation celebrated receipt of the GuideStar Platinum Seal of Transparency and 4-star rating from Charity Navigator for demonstrating strong financial health and commitment to accountability and transparency.

At the cusp of this new year, 2018 has many great promises on the horizon. The RLS Foundation will advocate for the RLS community, to strengthen our core programs, increase awareness of restless legs syndrome, fund research, and continue our quest towards a cure. To everyone who has helped us get to where we are, we thank you!

RLS Foundation Earns Coveted 4-Star Rating from Charity Navigator

Austin, Texas, Dec. 22, 2017 – The RLS Foundation’s strong financial health and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America’s largest independent charity evaluator.

Since 2002, using objective analysis, Charity Navigator has awarded only the most fiscally responsible organizations a 4-star rating. In 2011, Charity Navigator added 17 metrics, focused on governance and ethical practices, as well as measures of openness, to its ratings methodology. These “Accountability & Transparency” metrics, which account for 50 percent of a charity’s overall rating, reveal which charities operate in accordance with industry best practices, and whether these organizations are open with their donors and stakeholders. In 2016, Charity Navigator enhanced its methodology to further substantiate the financial health of 4-star charities.

“The RLS Foundation’s exceptional 4-star rating sets it apart from its peers and demonstrates its trustworthiness to the public,” said Michael Thatcher, president and CEO of Charity Navigator. “Only a quarter of charities rated by Charity Navigator receive the distinction of our 4-star rating. This adds the RLS Foundation to a preeminent group of charities working to overcome our world’s most pressing challenges. Based on its 4-star rating, people can trust that their donations are going to a financially responsible and ethical charity when they decide to support the RLS Foundation.”

“We’re thrilled to achieve the 4-star rating from Charity Navigator,” said RLS Foundation Executive Director Karla Dzienkowski, RN, BSN. “This rating demonstrates our good governance and financial accountability, and assures our supporters that we are making wise use of their investment. Seventy six percent of the money donated to the RLS Foundation is used to fund research towards better treatments and a cure, to advocate for RLS victims, and to raise awareness about this very serious medical condition.”

The RLS Foundation’s rating and other information about charitable giving are available free of charge on www.charitynavigator.org. More detailed information is available to Charity Navigator site visitors who become registered users, another free service.

About the RLS Foundation

The RLS Foundation is dedicated to improving the lives of men, women and children who live with restless legs syndrome (RLS, also known as Willis-Ekbom disease). Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and through research, find a cure for RLS. The Foundation serves healthcare providers, researchers, nearly 5,000 members and an estimated 7 million individuals in the United States who have RLS. The RLS Foundation has awarded over $1.6 million to fund medical research on RLS causes and treatments. For more information or to become a member, visit www.rls.org.

About Charity Navigator

Charity Navigator is the largest charity evaluator in America, and its website attracts more visitors than all other charity rating groups combined. The organization helps guide intelligent giving by evaluating the Financial Health and Accountability & Transparency of more than 8,000 charities. Charity Navigator accepts no advertising or donations from the organizations it evaluates, ensuring unbiased evaluations; nor does it charge the public for this trusted data. As a result, Charity Navigator, a 501(c)(3) public charity itself, depends on support from individuals, corporations and foundations that believe it provides a much-needed service to America's charitable givers.

Foundation Awards 10th Recipient of the Ekbom Award

The RLS Foundation is pleased to announce that Christopher J. Earley, MB, BCh, PhD, FRCPI, of Johns Hopkins Medicine, is the recipient of the prestigious 2017 Ekbom Award.
Dr. Earley has been a passionate champion of our mission for many years. Through his medical practice, he has helped many with severe RLS manage their symptoms, worked on many important research advancements for RLS, and has been an outstanding leader of the Foundation's Scientific and Medical Advisory Board (SMAB), which he chairs. Dr. Earley also serves as co-director of the Johns Hopkins Center for Restless Legs Syndrome, the very first RLS Quality Care Center.
"Dr. Early is committed to working with patients to find the best treatment program to manage their RLS so they can get back to enjoying life," Executive Director Karla Dzienkowski said. "Dr. Earley helps to drive the work of the RLS Foundation forward by ensuring that our programs fulfill our mission and goals of awareness, education and supporting research that will lead to better treatments and one day, a cure."
The Ekbom Award is awarded to an individual for meritorious service to the Foundation. Dr. Earley was a member of the Medical Advisory Board (MAB) for 16 years, and also served as MAB Chair. In 2015, Dr. Earley became the first Chair of the new SMAB.
"Dr. Earley’s work as both a RLS clinician and researcher give him a unique perspective and passion for the cause," Dzienkowski said. "I am thankful for his service and willingness to provide guidance, comment or feedback on issues surrounding the work of the Foundation."
Past winners of the Ekbom Award include Drs. Art Walters (1999), Richard Allen (2000) and Michael Silber (2014), all of whom are active members of the SMAB. Other awardees include former Executive Directors Cate Murray (2001) and Pickett Guthrie (2008) - also a founding member - founding members Robert Balkam (2003) and Sheila Connolly (2005), Wayne Henning (2008) and New Hampshire Support Group Leader and former board member Roberta Kittredge (2016).
Stay tuned for a full article about Dr. Earley and his contributions in the summer issue of NightWalkers.