Restless Legs Syndrome Foundation Blog

2024 Ekbom Award Recipient: Dr. Stefan Clemens

Dr. Stefan Clemens receives the 2024 Ekbom Award

On June 3, Stefan Clemens, PhD, HdR was honored with the prestigious Ekbom Award from the Restless Legs Syndrome (RLS) Foundation, in recognition of his exceptional leadership qualities. The RLS Foundation established the Ekbom Award in 1998 to honor individuals who make significant contributions to the RLS Foundation and toward enriching the lives of people who have RLS. Swedish neurologist Karl-Axel Ekbom, MD, for whom this award is named, published early reports on the disease and first named it restless legs syndrome. 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.

Dr. Clemens became a member of the Foundation’s Scientific and Medical Advisory Board (SMAB) in 2016. Serving as the Chair of the Research Grant Program, Dr. Clemens has significantly advanced the program's reach and impact. Under his leadership, the program has seen unprecedented growth, with a record-breaking number of proposals submitted this year. His efforts have not only amplified the program's scale but also extended its influence globally, with proposals coming from four different countries. Dr. Clemens' dedication to advancing RLS research continues to inspire the scientific community and provides hope for individuals affected by this condition.

The Foundation is pleased to have Dr. Clemens join the distinguished group of individuals who have received the Ekbom Award. Past recipients include Karla Dzienkowski, RN, BSN (2020), John Winkelman, MD, PhD (2020), Lew Phelps (2018), Christopher J. Earley MBBCH, PhD (2017), Bobbie Kittredge (2016), Michael Silber, MB ChB (2014), Bob Waterman (2008), Sheila Connolly (2005), Bob Balkam (2003), Cate Murray (2001), Richard P. Allen, PhD (2000), and Arthur Walters, MD (1998). Congratulations and thank you, Dr. Clemens!

Dr. John Winkelman and Karla Dzienkowski Receive the 2020 Ekbom Award

Two unsuspecting recipients were awarded the 2020 Ekbom Award while live streaming on the 2020 RLS Foundation Virtual Summit. This prestigious award honors individuals who have enhanced the lives of people with RLS and made significant contributions to the RLS community. Winkelman, who was in transit to join a panel of RLS experts on the Zoom meeting, accepted the award from his car! Dzienkowski accepted her award from her daughter, Ali Dzienkowski, at her home office while hosting the RLS Virtual Summit.

John W. Winkelman, MD, PhD

John Winkelman, MD, PhD is currently the Chief of the Sleep Disorders Clinical Research Program at Massachusetts General Hospital in Boston. John received his PhD in Psychobiology from Harvard University, an MD from Harvard Medical School and then completed both a residency in Psychiatry and a fellowship in Sleep Medicine at Massachusetts General Hospital. Winkelman has served on the RLS Foundation Medical Advisory Board, which later became the combined Scientific and Medical Advisory Board, since 2001. He was among the researchers who conducted studies that led to the approval by the FDA, in 2005, of the first dopamine agonist for treatment of RLS. He designed and is managing a major research program to measure the long-term efficacy and safety of opioids to treat RLS – The Opioid Registry. That groundbreaking program, now in its third year, has some 500 participants. He has recently contributed to the Mayo Clinic Proceedings Revised Consensus Statement on the Management of Restless Legs Syndrome to be published in early 2021. But Winkelman's life work in RLS research is not the only story here. His treatment and care of his thousands of RLS patients over the years is what makes him so beloved by this community. His persistence and dedication to providing relief to his RLS patients has changed lives and sometimes saved lives when RLS seemed to crush all hope of living with this disease.

"John Winkelman has devoted his life's work to helping RLS and sleep related patients access to the correct and most up to date medications in hopes of a more normal life. He is truly deserving of this Ekbom Award and I, as well as his many patients, thank him for his passionate commitment to RLS." - Bobbie Kittredge, 2016 Ekbom Award recipient

“William Osler said: "The good physician treats the disease; the great physician treats the patient who has the disease.” John has brought his intelligence, energy and enthusiasm to inhabit the realm of Restless Legs Syndrome, so as to better understand the patient and their suffering. Thus, he is truly deserving of this award.” - Christopher J. Earley, MB, BCh, PhD, FRCPI, 2017 Ekbom Award recipient

Karla M. Dzienkowski, RN, BSN

Karla Dzienkowski, RN, BSN became the executive director at the RLS Foundation in 2014. Memberships and donations were no longer growing and the Board of Directors recognized the need for a dynamic leader to put the organization back on a growth path while creating new initiatives to improve the lives of those living with RLS. Fortunately, the right leader was available. Dzienkowski had served on the RLS Foundation Board of Directors from 2004 – 2009, as its Vice-Chair from 2007 to 2009. Her leadership of the organization has been powered both by her training as a nurse and her experience as a mother with a daughter with RLS.

Since accepting the position as executive director, Karla has broadened the base of support and created new programs supporting the RLS community. Working with a small, energetic staff, memberships have doubled and the Research Grant Program has been re-energized. Dzienkowski has spearheaded innovative programs ranging from the 2018 RLS Patient Symposium and the RLS Physician Education on-demand series to developing a targeted collection of RLS resources for children and teens with RLS. She has built a strong RLS advocacy program and expanded the RLS Quality Care Center Program to eleven centers with more being certified in the coming months. All of her efforts have positioned the Foundation to begin its fourth decade of service to the RLS community as the premier patient-centered organization working on behalf of everyone with the disease.

“As someone who has shown a rare combination of drive and imagination, giving all of herself and then more to this organization, I cannot think of anyone more deserving of this award than Karla.” - Christopher J. Earley, MB, BCh, PhD, FRCPI, 2017 Ekbom Award recipient

Karla Dzienkowski's Ekbom Award should not be a surprise to anyone who knows her. She has brought change and growth to the Foundation with her positive attitude and sheer determination to make this a great organization. Thank you, Karla, for your commitment to excellence. - Bobbie Kittredge, 2016 Ekbom Award recipient

Past recipients of the Ekbom Award include Lewis Phelps (2018), 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.

Watch the videos here:

John Winkelman, MD, PhD - https://www.youtube.com/embed/itwjly6kp6E

Karla Dzienkowski, RN, BSN - https://www.youtube.com/embed/n8RW9r0Zul8

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