Monday 29 October 2018

2018 Ekbom Award



RLSF Board Chair, Lewis Phelps receives Ekbom Award

The RLS Foundation has named Lewis Phelps as recipient of the 2018 Ekbom Award. This prestigious award honors individuals who have enhanced the lives of people with RLS and made significant contributions to the RLS Foundation. Phelps, who is currently chair of the Board of Directors, has served for a total of 10 years on the board, including two terms as chair, in 2006–2008 and 2016–present.

“We are very grateful for Lew’s years of service to the Foundation and to the RLS community,” says Christopher J. Earley, MB, BCh, PhD, FRCPI, who presented the Ekbom Award to Phelps on Sept. 28 at the Board of Directors annual meeting. Dr. Earley is chair of the RLS Foundation Scientific and Medical Advisory Board. “During Lew’s tenure on the Board of Directors, he has guided the organization through important milestones such as the Opioid Advocacy Initiative, led the restructuring of the organization and built a reserve to ensure adequate funding for research and future organizational needs.”

The RLS Foundation established the Ekbom Award in 1998. The award is named for Swedish neurologist Karl-Axel Ekbom, MD, who published early reports on the disease and first named it restless legs syndrome.

Past recipients include Dr. Christopher Earley (2017), Roberta Kittredge (2016), Dr. Michael Silber (2014), Pickett Guthrie (2008), Dr. Wayne Henning, posthumously (2008), Robert Waterman (2007), Sheila Connolly (2005), Robert Balkam (2003), Cate Murray (2001), Dr. Richard Allen (2000) and Dr. Arthur Walters (1999).

The RLS Foundation is grateful to the Ekbom family for allowing their name to be used for this distinguished award in honor of Dr. Ekbom and his work.

“The Foundation has benefitted greatly from Lew’s two tenures as chair of the board. The early 2000s were a time of economic difficulty in the United States, and Lew’s communications and public relations background helped to guide the organization through key strategic planning. Under his leadership, the board instituted a reserve to ensure adequate resources to fund the Research Grant Program and RLS Quality Care Centers, while maintaining sufficient resources for operational expenses. As executive director of the Foundation, I have worked closely with Lew to reorganize the financial reporting of the organization, reinvigorate our Research Grant Program and expand our network of certified RLS Quality Care Centers. In 2015, the Foundation committed to a Year of Augmentation to raise awareness in the patient, physician and public realms about augmentation, a common, underdiagnosed side effect of dopaminergic therapy. The huge success of this educational outreach led to a second-year expansion of this program. Under Lew’s leadership, in 2017 the Foundation and the RLS community began an awareness and advocacy campaign to ensure access to opioids for severe cases of RLS and to increase federal funding for RLS research.”– Karla Dzienkowski, RLS Foundation Executive Director

“Congratulations, Lew, on this well-deserved award! I feel privileged to have worked alongside you as you advocated for more global awareness of RLS. Your years of service to the Foundation have been an inspiration to all of us. You have been a mentor to me, and I have been grateful for your continued leadership in helping others as we search for a cure.”– Bobbie Kittredge, RLS Foundation support group leader, former board member, and Ekbom Award recipient

“Congratulations to Lew. Over the years, your steady leadership, wisdom, patience, ability to bring people together, sense of humor and gracious demeanor all helped make the RLS Foundation board a strong, functioning group. It was a privilege to work with you during your first tenure as board chair. I especially remember you as a calm, experienced leader who guided us toward a safe resolution when faced with a challenge. This award demonstrates how much we all appreciate the generosity with which you have shared your time and talent.”– Pickett Guthrie, RLS Foundation founding member, former executive director, and Ekbom Award recipient

Friday 12 October 2018

#MakeADifference4RLS in 2018


October 12, 2018

Thank You for all your support!

RLS Awareness Day on Sept. 23, 2018 was a great success! At the Foundation, all of our social media channels were flooded with the hashtag #MakeADifference4RLS. Photos poured in from across the country of people holding the latest NightWalkers magazine cover with its eye-catching RLS awareness graphic. We invite you to view these images in the Awareness Day 2018 photo album on the Foundation’s Facebook page. Here is a staff favorite!

Many members of the RLS community acted on our “10 Ways to Raise Awareness” list, while some created ways of their own to spread RLS awareness. The Foundation emailed an Awareness Day media packet to support group leaders that included a press release, media talking points, public service announcement and RLS fact sheet. One of our long-time volunteer support group leaders, Mary Lou Mennona, emailed our press release to a number of Florida newspapers to spread the word about RLS. The chair of our Board of Directors, Lew Phelps, shared RLS information and resources through a neighborhood social networking channel. The child of a Foundation member wrote a report about RLS for school and shared a photo of himself holding NightWalkers magazine on Facebook. These are just a few of the many ways our community banded together to educate others about how RLS is a serious but treatable condition. Thank you to all who participated!

Awareness and education are so important. At least 10 million people in the US have RLS, yet only about 5,000 have joined the RLS Foundation as members. It is our hope that by spreading awareness during September – and throughout the year – we can reach people who don’t yet know about the Foundation, and offer them the information and support they need.

Although Awareness Day has passed, each of us can do our part and continue to spread the word: You are not alone! Help is available for those with even the most severe cases of RLS, which includes those experiencing augmentation. And the RLS Foundation offers hope, through programs to raise awareness, improve treatments, and fund research to find a cure. Learn more at.