Restless Legs Syndrome Foundation Blog

Board Spotlight: Dr. Christopher Earley

By Adrianna Colucci, RLS Foundation Administrative Assistant

Christopher J. Earley, MB, BCh, PhD, FRCPI, is both a professor of neurology at the renowned Johns Hopkins School of Medicine and the director of the Johns Hopkins Center for Restless Legs Syndrome, a certified RLS Quality Care Center in Baltimore. Among various other achievements, he is also chair of the RLS Foundation’s Scientific and Medical Advisory Board (SMAB). Dr. Earley’s devotion to neurology and sleep medicine for over 30 years has made him widely acclaimed, particularly for his research and expertise in managing RLS. His commitment was recognized in 2017 when he received the RLS Foundation’s prestigious Ekbom Award.

Q. When did you initially discover the RLS Foundation, and how did you become involved?

A. I believe the year was 1992. Dr. Art Walters, my colleague Dr. Richard Allen and I met with Pickett Guthrie in Washington, DC. This was right around the time Mrs. Guthrie formed the idea of establishing an RLS Foundation. By the time it was fully formed, I was an active member of the Scientific and Medical Advisory Board. I eventually became chair of the Scientific and Medical Advisory Board, and am currently in my fourth year and second term as chair.

Q. As chair of the Scientific and Medical Advisory Board, can you describe some of your responsibilities?

A. As chair, I primarily maintain an advisory role, assisting those who maintain the daily functions of the Foundation. I am responsible for the final review of any newly revised medical publications, alongside other members of the SMAB, as well as for suggesting new topics of clinical importance. More generally, I have oversight of ongoing initiatives within the SMAB, including communication with the RLS Foundation Brain Bank, reviewing grants and advising the Board on public health issues. I am actively involved in contributing to the educational components of the Foundation such as the monthly webinar series, the Virtual Summit, the National Patient Symposium and the Public Policy Initiative.

Q. Throughout your educational and professional achievements, what inspired your special interest in RLS research?

A. “Serendipitous” comes to mind. When I began working at Johns Hopkins, I was initially set to design and run the acute stroke program, which I did for numerous years. Part of my responsibilities included working in the sleep clinic where sleep research was in its earlier stages. About three years prior, carbidopa/levodopa had begun to be prescribed for RLS, so we were seeing many RLS patients with signs of augmentation. Some of the very first RLS patients I treated were augmented, so I became heavily involved with research relating to dopamine agonists and this side effect. We started to develop a reputation for treating RLS, and after about 10 years I became involved full-time with the sleep clinic. I am now the director of the certified RLS Quality Care Center at Johns Hopkins.

Q. What accomplishments or successes are you most proud of from your involvement with the SMAB?

A. One of the important accomplishments I’ve witnessed throughout my involvement is helping to establish an identity and a direction for the RLS Foundation. When Karla Dzienkowski became the executive director, she asked me to become chair of the SMAB. This was an opportunity to work with someone who was passionate about developing clear objectives and upholding the values of the Foundation. I am proud to have played a small role in successfully building and strengthening the organization, which is truly the only hope for some RLS patients.

Q. What are some of the established goals the SMAB has in the foreseeable future?

A. We would like to increase the availability of grants for those who are doing research in areas pertinent to what we believe contributes to the pathophysiology of RLS. I consider this one of my primary roles moving forward. The second goal we have set is to advance our educational outreach to a larger audience. It is imperative to reach not just the neurologists and sleep specialists, but also the primary care physicians to educate them on the clinical and scientific aspects of RLS. While we have made great strides, there is still more work to be done.

Q. Beyond RLS, you are also published in endocrinology and internal medicine. Do you find that your research intersects and if so, in what way?

A. My PhD was involved with the endocrine system, looking at behaviors and brain chemistry. My first eight to 10 years at Johns Hopkins included stroke research; however, my broadest interest was focused on sleep medicine – trying to get a more in-depth understanding of sleep-wake biology and clinical indications. There is great depth to sleep research and understanding the true biological nature of sleep, such as why we sleep and the value of sleep. The framework of RLS research exists within the framework of sleep biology. I am extremely proud of the progress made by many of our researchers on the RLS Foundation SMAB to unlock the mysteries of RLS and find better treatments.

Why Your Voice Matters

Your advocacy efforts have been paying off! In October 2017, the RLS Foundation launched an advocacy initiative to inform federal policy makers about restless legs syndrome (RLS) with three main goals in mind: increasing funding for research, protecting appropriate access to opioid therapy, and expanding physician education and public awareness.

Many members of the RLS community have done their part in pursuing these goals by reaching out to their federal and local representatives via email, letter or phone – as well as joining the Foundation in Washington, DC, last May for RLS Advocacy Day on Capitol Hill. As a result, Congress continues to highlight RLS medical research at the National Institutes of Health (NIH) through report language in annual appropriations bills; and the Department of Defense continues to pursue important research on sleep disorders.

You may be wondering, “How does this affect me?” Educating legislators about the concerns of RLS patients puts necessary pressure on Congress to continue funding major research institutions, which in turn allocate resources to further research on RLS and sleep disorders in general – bringing scientists closer to finding better treatments and ultimately, a cure.

The proof is in the grant allocations that have been awarded to key researchers in the field, including members of the Foundation’s very own Scientific and Medical Advisory Board. Brian B. Koo, MD, who is the director of the Yale Center for Restless Legs Syndrome (an RLS Quality Care Center), recently received a grant from the Department of Defense for his work on RLS and hormones. Dr. Koo and his team at Yale University are investigating whether the levels of melanocortin hormones are increased in the blood and cerebral spinal fluid of people with RLS. If you are interested in participating, see details on www.rls.org.

Likewise, RLS Foundation advisory board member James Connor, PhD, at Penn State University received a grant from the National Institute of Neurological Disorders and Stroke to investigate iron deficiency and the RLS brain, in collaboration with David Rye, MD, PhD, and Lynn Marie Trotti, MD, MSc, both of Emory University. Dr. Trotti is the director of the Emory Sleep Center – an RLS Quality Care Center. Together, these researchers have developed models that will help to determine how cerebral spinal fluid from RLS patients affects the iron transport at the blood brain barrier.

Also funded by the NIH are RLS Foundation advisory board member Kathy Richards, PhD, RN, FAAN, of the University of Texas; and Christine Kovach, PhD, RN, FAAN, of the University of Wisconsin. They received a large grant from the National Institute on Aging to improve the treatment of nighttime agitation in people with Alzheimer’s disease. The researchers hypothesize that RLS may be a cause for nighttime agitation and sleep disturbance in these individuals.

These experts have made significant advances in the field of RLS research. Dr. Koo is one of the world’s foremost experts on the epidemiologic research that links periodic limb movements during sleep and cardiovascular disease. Dr. Connor is a leader in understanding the cellular and molecular mechanisms by which cells regulate iron. Dr. Rye was part of an international team that identified the first gene variant associated with RLS. And, Dr. Trotti is a two-time recipient of the American Academy of Sleep Medicine Foundation Strategic Research Award for her work on central disorders of hypersomnolence, RLS and sleep in neurodegenerative disease.

In addition to their work in research, these experts also work directly with the RLS Foundation to increase their impact on the RLS community. Drs. Connor, Koo and Trotti are all members of the RLSF Scientific and Medical Advisory Board. Dr. Koo and Dr. Trotti serve as the directors of the Yale Center for Restless Legs Syndrome and the Emory Sleep Center, respectively. Dr. Rye is a certified RLS provider at the Emory Sleep Center. Finally, Dr. Koo and Dr. Trotti play a significant role in educating the public, as the medical editor of NightWalkers and the author of the “In the News” column, respectively.

RLS Foundation Scientific and Medical Advisory Board member John W. Winkelman, MD, PhD, of Harvard University; and board member Jeffrey Durmer, MD, PhD, of Fusion Health; have attended numerous meetings with policy makers to advocate the needs of RLS patients.

Christopher Earley, MB, BCh, PhD, FRCPI, also adds a powerful voice to RLS advocacy in Washington. Dr. Earley is not only the chair of the RLS Foundation’s Scientific and Medical Advisory Board, but also the director of the John’s Hopkins Center for Restless Legs Syndrome, an RLS Quality Care Center. He has joined the RLS Foundation in Washington on multiple occasions to advocate for the needs of RLS patients, healthcare providers, and researchers. Dr. Earley is conducting an NIH-funded study to evaluate epigenetic changes in DNA from blood (lymphocytes) and from brain autopsy in individuals with and without RLS.

Here is Dr. Earley’s take on the recently funded research projects: “The truth is, restless legs syndrome is something that most people don’t know about, and definitely very few people understand. When it comes to competing for grant-based money whether through the National Institutes of Health, National Science Foundation, or Department of Defense, name recognition is important. The RLS Foundation’s presence in Washington, DC, has been very important in enhancing visibility of the name and the disease. This gives us a fighting chance for competitive grant money when measured up against heart disease, cancer, and neurological conditions like Alzheimer’s disease. Further work is needed. Each visit to Washington increases the possibility of giving RLS higher visibility on grant-supported initiatives.”

Scientific and Medical Advisory Board Member and NightWalker "In the News" Author

Dr. Trotti has made many contributions to the RLS community, both clinically and through research. Since 2014, Dr. Trotti has served on the RLS Foundation Scientific and Medical Advisory Board. She is the director of the RLS Quality Care Center at the Emory Sleep Center, and an associate professor of neurology at Emory University School of Medicine.

Dr. Trotti treats patients with all sleep disorders, including RLS. Her research focuses on the central disorders of hypersomnolence, such as narcolepsy, idiopathic hypersomnia, and Kleine-Levin syndrome; on parasomnias, such as rapid-eye movement (REM) behavior disorder and sleepwalking; and on the overlap of sleep and movement disorders such as Parkinson’s disease. Dr. Trotti has been awarded federal grants for several projects, including “Genotype-Phenotype Correlations in Restless Legs Syndrome and Periodic Limb Movements of Sleep (PLMs).” Her contributions to research articles on the genetic risk factors for PLMs, and the association between elevated C-reactive protein with PLMs in patients with RLS, have been published in the New England Journal of Medicine, and in Brain, Behavior, and Immunity, respectively.

Dr. Trotti holds leadership roles as a committee member of the American Academy of Sleep Medicine, the National Sleep Foundation and the Hypersomnia Foundation. In 2011, she received the American Academy of Sleep Medicine Movement Disorders Section Investigator Award and the Sleep Research Network Diversity Travel Award. Dr. Trotti is also an active participant in community outreach, providing her expertise to various platforms such as the Narcolepsy Network annual meeting and the American Parkinson’s Disease Association education meeting.

The RLS Foundation is grateful for Dr. Trotti’s many contributions: her knowledge, her impact on the lives of countless patients, and her dedication to understanding and finding a cure for RLS through research.

Welcome Denise Sharon, MD, PhD, FAASM and J. Andrew Berkowitz, MD to the Scientific and Medical Advisory Board.

Denise Sharon, MD, PhD, FAASM

Dr. Sharon graduated in 1981 from the Sackler School of Medicine, Tel-Aviv University in Israel. After completing her Residency in Psychiatry, she continued her studies in Clinical Psychology at Temple University in Philadelphia, Pennsylvania. In 1991, Dr. Sharon gave her dissertation on the “Use of ECT in depressed elderly,” and received Certification in Psychology by the American Association of State and Provincial Psychology Boards in 1992.

Following her extensive education in Psychiatric Medicine and Clinical Psychology, Dr. Sharon began her training in Sleep Medicine through the Department of Psychiatry and Health Behavior MCG/VAMC in Augusta, GA from 1993-1995. She trained with the Sleep Medicine Associates of Texas in Dallas, Texas; worked as an Independent Contractor for Sleep Consultants, Inc. in Fort Worth, Texas; and worked as a Sleep Specialist for Sleep Medicine Associates of Texas in Dallas, Texas after becoming certified on Sleep Disorders by the American Board of Sleep Medicine in 1997 and receiving her credentials as a Fellow of the American Academy of Sleep Medicine.

Next, Dr. Sharon took her expertise to Louisiana where she worked as a Sleep Specialist for Tulane Hospital and Clinics (1999-2005) and Premier Sleep Medicine Center (2003-2006), while being appointed as a Sleep Medicine Fellowship Program Co-Director for Tulane School of Medicine in New Orleans, Louisiana in 2002. Meanwhile, she held a role as the Clinical Director of the Advanced Sleep Center in Metairie, Louisiana from 2005-2018.

Throughout her education, training and work, Dr. Sharon has amassed research experience including, but not limited to, work as a Research Associate/Quantitative Electroencephalographer in the Laboratory of Psychoelectrophysiology, Department of Psychiatry and Health Behavior through MCG. Her research has been published in numerous journals, as well as industry supported pieces on Restless Legs Syndrome for Pfizer, Xenoport, Luitpold, and more.

Dr. Sharon’s contributions to Sleep Medicine do not stop there. She has been involved in multiple committees for the American Association of Sleep Medicine (AASM), such as the Center Accreditation, Fellowship Accreditation, Nosology Committees and Movement Disorders Section (vice-chair). She is a member of the International Restless Legs Syndrome Study group. and the American Academy of Sleep Medicine Task Force on the update of the treatment of RLS and PLMD; just another way in which she is helping those with RLS.

Today, Dr. Sharon works as an independent consultant out of the Sleep Disorders Adult and Children Center of the Pomona Valley Medical Center in Claremont, CA. Needless to say, with her impressive background and endless efforts to further the understanding of RLS in the field of Sleep Medicine, we are excited to welcome Dr. Sharon to the Scientific and Medical Advisory Board.

J. Andrew (Andy) Berkowitz, MD

Dr. Berkowski is an Assistant Professor at the University of Michigan and an expert in RLS. He cares for patients in the Sleep Disorders Center in Ann Arbor, Michigan; addressing a wide range of sleep disorders in adults.

Before receiving Board Certification in Sleep Medicine and Neurology, Dr. Berkowski earned his bachelor’s degree in religious studies at Stanford University. Next, he returned to his home state of Michigan to study medicine—graduating from Wayne State University School of Medicine in 2010. By 2014, he completed a transitional year internship at Henry Ford Hospital and neurology residency training at the Detroit Medical Center/Wayne State University. And in 2015, Dr. Berkowski completed his fellowship training in sleep medicine at the Stanford University Medical Center.

With a diverse background and clinical and research interests in RLS, we are thrilled to add Dr. Berkowski as a member of the Scientific and Medical Advisory Board.