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

#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.

RLS + Quinine Update

Quinine Treatment for RLS or Leg Cramps is Associated with Increased Mortality

By Lynn Marie Trotti, MD, MSc

An excerpt from the Summer 2017 edition of NightWalkers, the Foundation's quarterly magazine

“Association Between Long-Term Quinine Exposure and All-Cause Mortality.” Fardet L, et al. JAMA, May 2017.

The Background:

Nocturnal leg cramps are common, affecting over one-third of adults over age 60 at least occasionally, and over half of adults over age 80. For many years, quinine was used for treatment of cramps, either as a prescription in pill form or through drinking tonic water for its high quinine content.

In 2006, the FDA recommended against the use of quinine for leg cramps because of the potential for serious side effects or death. Despite this warning, use of quinine for the treatment of leg cramps has not ceased.

The Research:

Researchers used a large healthcare database of primary care patients in the United Kingdom to evaluate quinine use and mortality across approximately 175,000 people from 1990 through 2015. Individuals who were prescribed a dose of at least 100 mg per day of quinine for at least one year were each compared to three people who were not prescribed quinine. Those who were prescribed quinine had either cramps (96 percent of the quinine-prescribed group) or restless legs syndrome (4 percent), so controls were chosen with these same diseases (96 percent had cramps and 4 percent had RLS).

People exposed to quinine were, on average, one year older than controls, and were prescribed an average quinine dose of 203 mg per day. There was a 24 percent increase in risk of dying during the study period in the group prescribed quinine. Considering only those people prescribed quinine for RLS, there was still a significant increase in mortality risk in those with a quinine prescription.

The Bottom Line:

Quinine pills are not recommended for the treatment of RLS or leg cramps. It is unclear whether daily use of tonic water, which generally contains less than 100 mg of quinine per liter, also increases mortality risk.

New Questions:

Although there are multiple proven treatments available for RLS, data is very limited on how best to treat nocturnal leg cramps. As quinine is to be avoided, what treatments are effective for nocturnal leg cramps?

Want to subscribe to NightWalkers? Become a member today to receive this quarterly member publication, along with other member benefits!

The Link Between Sleep Disorders and Cardiovascular Health

On Sept. 19, the American Heart Association released a scientific statement confirming that sleep disorders, like obstructive sleep apnea and insomnia, are associated with negative cardiovascular health.

The American Academy of Sleep Medicine and the Sleep Research Society recommend that adults get in at least seven hours of sleep every night. However, this is rarely the case. In fact, according to the National Heart, Lung and Blood Institute, roughly 50 - 70 million adults in the U.S. each year report insufficient sleep or suffer from a sleep disorder.

With these new findings in mind, it was suggested that the AHA focus on sleep behavior through a public health campaign concerning proper sleep habits, as well as educating clinicians on how to screen for sleep disorders. Additionally, it was recommended that the impact of other sleep disorders, like restless legs syndrome and periodic limb movement , be tested for their relation with cardiometabolic risk.

To read more about the AHA's statement, check out this article featured on Cardiovascular Business.