Restless Legs Syndrome Foundation Blog

Q&A With Advisory Board Member Dr. Rochelle Zak

Rochelle Zak, MD is an RLS specialist who is board-certified in sleep medicine and neurology and treats patients with sleep disorders at the University of California San Francisco Medical Center. She volunteers on the RLS Foundation Scientific and Medical Advisory Board and is a member of the International RLS Study Group Board. Her research includes a special focus on women’s sleep health, particularly during the perimenopausal transition.

Q. What drew you to sleep medicine, and what motivated your interest in RLS?

I began my career in neuro-ophthalmology, a subspeciality focused on diagnosing and treating vision problems caused by neurological diseases. A close friend of mine was working in sleep medicine at New York Hospital. When one of her colleagues became sick, I was asked to step in and help. That experience sparked an unexpected passion for sleep medicine and ultimately led me to pursue formal training in the field.

My specific focus on RLS grew from a 45-year-old patient I encountered nearly 30 years ago, during my time at New York Hospital. He presented with discomfort on the left side of his chest, which to many would indicate cardiac issues. When extensive testing proved inconclusive, eventually we recognized this as his unique manifestation of RLS.

Through this patient, I learned (almost) everything there was to know about RLS. Working as a team – provider and patient – we trialed many treatment options, but ultimately methadone provided the greatest relief. This experience underscored how RLS does not behave as most medical disorders do, both in how it presents and how it responds to medication. While this presents challenges for both the patient and provider, it is all the more rewarding and meaningful when we find the best course of treatment.

Q. How has our understanding of RLS evolved over the course of your career?

A number of changes have occurred, but the first is a greater sophistication in our understanding of the pathophysiology of RLS. This includes its relationship to iron and various aspects of dopamine dysfunction, as well as the roles of glutamate and adenosine. Current research is establishing connections between imbalances in inhibitory and excitatory dopamine receptors and the interplay between the spinal cord and brain.

The second evolution is our prescribing habits and awareness of the roles of additional supplements. We have moved away from dopamine agonists because of the development of augmentation, with an increased usage of the gabapentinoids and a move from using shorter-acting to longer-acting opiates. In addition, there is now awareness of the role of vitamin D in RLS pathophysiology. The recent American Academy of Sleep Medicine Clinical Practice Guideline on RLS is a must-read and delineates much of this.

Q. Are there specific populations – such as perimenopausal individuals, pregnant people or older adults – where you feel additional RLS research is especially needed?

Given the complexity of managing RLS during pregnancy, there is an absolute need for continued RLS research in pregnant people, although as you can imagine, there are many studies one may want to do that cannot be done. There is also a great lack of general research on menopause, of which there are two stages – the menopausal transition and the postmenopausal state. The menopausal transition can be associated with fragmented sleep, low iron, fluctuating hormones and other exacerbating factors that can worsen RLS symptoms. We also need more research on the postmenopausal stage, when some of these factors have stabilized, so we can record how RLS changes during these two very different periods.

Q. Your research focuses on women’s health during the perimenopausal transition. What should individuals know about how menopause may impact their RLS symptoms?

Sleep fragmentation can occur during menopause from many causes, most notably hot flashes, exacerbating RLS symptoms. Fortunately, gabapentinoids can be used to treat both hot flashes and RLS. However, other medications commonly prescribed during the menopausal transition are known to worsen RLS symptoms. These may include serotonin-norepinephrine reuptake inhibitors (SNRIs) such as venlafaxine, or selective serotonin reuptake inhibitors (SSRIs) such as paroxetine. The RLS Foundation’s Depression and RLS handout may be helpful during conversations with your physician on medication triggers.

Prolonged or irregular spotting can also occur during menopause, which can be a source of significant iron loss but may not be recognized as such. Iron testing and, if needed, supplementation, can be beneficial. Hormone fluctuations are common during menopause; however, we have very little research on the role hormones may play in RLS symptom onset.

Q. What advancements in RLS treatments or future research do you feel will make the biggest impact on RLS management?

Expanding the range of medications available for RLS management is important. But I would also like to have a greater understanding of the relationship between spinal fluid ferritin levels, which give an indication of the iron available to the brain, versus blood ferritin levels, which is what we can easily monitor. Our current understanding of RLS pathophysiology suggests that there is greater difficulty in getting ferritin from the blood into the brain of individuals with RLS – a transport issue of ferritin across the blood-brain barrier. The blood-brain barrier is a protective layer of cells that controls what enters the brain and allows essential nutrients to pass through. If we could understand whether there is a universal serum ferritin level in individuals with RLS that can guide our therapy and/or understand the mechanism preventing easier transport of ferritin into the brain, we might be able to be more specific and effective in how we treat patients.

Q. How can individuals best support each other when dealing with chronic or invisible illnesses?

I think back to what my father, who was a physician, taught me: It’s all in the history. There is no test for RLS, so it is crucial to find a healthcare provider who is willing to thoroughly investigate a patient’s history. The RLS Foundation resources, including handouts, webinars and the Medical Bulletin, can help educate patients so that they have more effective conversations with their clinician to understand how their medical history informs their present situation.

You can connect with a safe space by joining a support group where you can share wisdom and support each other. The RLS Foundation hosts near-weekly support meetings, which are listed at www.rls.org/get-support.

April 14, 2026

RLS and Mental Health: Q&A with Dr. Brian Koo

Brian Koo, MD, is the director of the Yale Center for Restless Legs Syndrome, a certified RLS Quality Care Center, as well as the medical director of Sleep Laboratory at the Veterans Affairs Connecticut Healthcare System. In October 2025, Dr. Koo presented an RLS Foundation webinar, “Anxiety and Depression in Restless Legs Syndrome.” Following is a selection of his answers to questions asked by the attendees. Please note: The information presented in webinars is offered for informational purposes only and should not be considered a substitute for the advice of a healthcare provider.

April 3, 2026

Finding Steadiness During Seasonal Blues

By Elyse Hopfe, RLS Foundation Program Manager

Often, as the colder months of the year arrive, many of us feel cornered by an all-too-familiar wave of sadness. For some, it might be described as glum or melancholy. For others, it may feel like numbness. And for many, it may be described as depression, which can also include a clinical diagnosis.

There are two essential truths of this sensation that those who experience it may need to hear.

One truth is that your mood being influenced by the weather, temperature or duration of daylight hours is a scientific, naturally occurring phenomenon. Research on seasonal changes in mood and behavior show that a significant portion of people experience increased depressive or anxious symptoms during the winter months, even if they do not meet the full clinical criteria for seasonal affective disorder (SAD). Even the emotional weight of the holiday season can be a trigger for these feelings.

Many species, even beyond humans, are used to slowing down in several ways for colder temperatures and shorter days because our bodies are so complex and sensitive to our environment. When the weather changes, our bodies work extra hard to adjust to our surroundings, making some seasons more difficult for certain people, both physically and mentally. Also, sleep and wake cycles shifted by different hours of sunlight can disrupt your circadian rhythm and sleep cycle and, consequently, your mental health.

A second and more important truth is that you are never alone in this. No matter how isolated you may feel, it is guaranteed that there are support systems available to meet you where you are mentally. Not everyone can just step into the sunshine and feel better for the rest of the season, especially when feeling lost or miserable. For all who are facing a decline in their usual mood, there is a dedicated community that understands and wants to help, even just by listening. Sometimes, admitting that you don’t feel like yourself is the first step toward coping with “cold weather blues” or “warm weather blues,” depending on the individual.

There isn't one universal solution to these mood shifts, but addressing them starts with listening to your inner voice. Perhaps, during a happier season, you regularly engage in activities like hiking, swimming, seeing family or creating art. What feeds your soul? If you are not able to engage in these activities at certain times of the year, it may be helpful to find an alternative activity that you can enjoy even half as much in the meantime. Self-expression, exercise and finding community are a few types of seasonal activities that may nourish you.

If you would like a community of support or a one-on-one conversation with someone who understands RLS, the RLS Foundation has a dedicated group of volunteers who are ready to support you. In an emergency, help is available by calling 911 or texting a crisis hotline for immediate assistance. Sometimes, you might need someone to just listen, and that is part of the beauty of what humans can offer to one another.

Advocacy Action Alert: Include "Sleep Disorders and Restriction" in the Department of Defense Peer-Reviewed Medical Research Program

Advocacy is an important part of the RLS Foundation's work to increase awareness and promote RLS research. We ask RLS community members to participate in Advocacy Action Alerts to expand our reach within Congress. If you have any questions, please email adrianna@rls.org.

Background: Each year, the United States Senate crafts an annual Department of Defense (DOD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). For a condition to be included, Senators need to support the condition and officially ask for its inclusion. Senators have many competing appropriations priorities and for them to support a condition-specific request, they need to be educated and asked to do so by their constituents.

Why It’s Important: As a result of grassroots outreach, the Senate has recognized sleep disorders and restriction as a condition eligible for study annually. This support allows researchers to compete for $370 million in federal research funding each year.

Recently, Congress finalized the DOD appropriations bill for Fiscal Year (FY) 2026 and “sleep disorders and restrictions” was once again included on the list for the PRMRP. However, Senators are now working on FY 2027 DOD appropriations bill and will be deciding which conditions will be included on the next PRMRP eligible conditions list. We need your advocacy to help ensure that we are included on this list for the upcoming FY27 bill as well.

Request: Please reach out to the offices of your Senators and ask that they “support the continued inclusion of sleep disorders and restriction in the DOD PRMRP’s eligible conditions list in FY 2027.”

Steps to Take Action:

*Complete Step 1 as soon as possible, as you will need the contact information for the Health Legislative Assistant before completing the rest.

1. Contact our Washington representative, Briana Walker at walker@hmcw.org. Briana will provide the contact information of the Health Legislative Assistant in your Representative’s DC office. Provide your home address and zip code so Briana can identify your House Representative’s Health LA.

Email Subject Line: RLSF: DOD PRMRP

*Please cc: Adrianna Colucci, RLS Foundation Communications Coordinator (adrianna@rls.org)

2. Once you have the contact information, reach out to your Senators and ask that they support the inclusion of “sleep disorders and restriction” in the Department of Defense’s Peer-Reviewed Medical Research Program. We ask that you reach out to your Senators no later than April 30th.

3. Please consult the list below and see if one of the Senators from your state serves on the Senate Defense Appropriations Subcommittee. Please note that you can still reach out even if your Senator is not on the Subcommittee.

4. Complete the sample message below with your RLS story and send your completed letter to your Senator’s health staffer provided by Briana.

**Sample Message**

The Honorable _______

________ Senate Office Building

Dear Senator_______,

My name is [Your Name] and I am a constituent and an advocate for the Restless Legs Syndrome community. I write you today on behalf of individuals affected by Restless Legs Syndrome (RLS) to thank you for ensuring that “sleep disorders and restriction” was included in the eligible conditions for Fiscal Year (FY) 2026 and ask that you work with your colleagues to ensure that “sleep disorders and restriction” is once again listed as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) within the Committee Report accompanying the Senate’s FY 2027 Defense Appropriations Bill. .

[Briefly share your personal RLS story in 2-3 sentences.]

I hope you will work with your colleagues in support of once again listing “sleep disorders and restriction” in FY 2027 as a condition eligible for study through the annual list on the Committee Report accompanying the Senate’s FY 2027 bill.

On behalf of RLS affected constituents, thank you for your time and your consideration of this request.

Sincerely,

[Name]

[Address]

****

It is important to reach out as soon as possible, to ensure that your congressional offices have time to review and approve the letter. Thank you for your support as an advocate! If you have questions, please email adrianna@rls.org.

• Chair: Mitch McConnell (Kentucky)
• Ranking Member: Christopher Coons (Delaware)

• Susan Collins (Maine)
• Richard Durbin (Illinois)
• Lisa Murkowski (Alaska)
• Patty Murray (Washington)
• Lindsey Graham (South Carolina)
• Jack Reed (Rhode Island)
• Jerry Moran (Kansas)
• Brian Schatz (Hawaii)
• John Hoeven (North Dakota)
• Tammy Baldwin (Wisconsin)
• John Boozman (Arkansas)
• Jeanne Shaheen (New Hampshire)
• Shelly Moore Capito (West Virginia)
• Chris Murphy (Connecticut)
• John Kennedy (Louisiana)

April 1, 2026

RLS Foundation Certifies Chase Family Movement Disorders Center as a QCC

As an RLS Quality Care Center, the Chase Family Movement Disorders Center is certified to provide expert care to patients with restless legs syndrome, a chronic neurological sleep disorder.

AUSTIN, TEXAS, April 1, 2026 – The Restless Legs Syndrome (RLS) Foundation announces it has certified Hartford Healthcare’s Chase Family Movement Disorders Center as an RLS Quality Care Center.

An estimated 2%-3% of adults need daily clinical treatment for RLS, a chronic neurological disease that disrupts sleep and can have a devastating impact on overall quality of life. As an RLS Quality Care Center, the Chase Family Movement Disorders Center will serve as a destination for RLS patients who need expert medical care.

“We are pleased to be recognized with this designation,” says Duarte Machado, MD, director of the Quality Care Center at the Chase Family Movement Disorders Center. “We are honored to be recognized as an RLS Quality Care Center and proud to help elevate national awareness of the significant needs within this patient community. By integrating our strengths and expertise in movement disorders and sleep medicine, we are uniquely equipped to deliver innovative, patient-driven care for all. Through our collaboration with the RLS Foundation, we aim to continue to advance clinical excellence, broaden access to our specialized care, and foster greater understanding of patient care needs through our affiliation with the Connecticut RLS Support Group,” says Dr. Machado.

The Chase Family Movement Disorders Center joins a network of 16 other institutions in the US and Europe that are certified by the RLS Foundation as Quality Care Centers. Through this program, the Foundation aims to improve the diagnosis and treatment of the disease worldwide.

RLS Quality Care Centers:

• Provide expert care to RLS patients
• Serve as information and referral resources for healthcare providers who treat patients with RLS and regional support groups
• Support patients and families through educational offerings and literature
• Share information with other centers to improve clinical best practices
• Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

“We are delighted to welcome the Chase Family Movement Disorders Center to the RLS Foundation Quality Care Center network,” says RLS Foundation Executive Director Karla Dzienkowski. “Individuals with RLS face significant challenges in finding healthcare providers who are informed in the management of moderate to severe forms of RLS. The Chase Family Movement Disorders Center provides access to knowledgeable and skilled healthcare providers who can provide personalized treatment plans to improve quality of life for those living with RLS.”

Dzienkowski adds, “The goal of the Quality Care Center network is to provide RLS patients access to healthcare providers proficient in RLS management. We look forward to our partnership with the Chase Family Movement Disorders Center to provide treatment access, management and quality of life improvement for RLS patients.”

The contact information for USC is listed on the RLS Foundation website. Other certified RLS Quality Care Centers are:

• Johns Hopkins Center for Restless Legs Syndrome
• Mayo Clinic Center for Sleep Medicine
• Houston Methodist Neurological Institute
• Stanford Sleep Medicine Center
• Emory Sleep Center
• Yale Center for Restless Legs Syndrome
• Vanderbilt University Medical Center
• Scripps Clinic Viterbi Family Sleep Center
• Neurocenter of Southern Switzerland
• Innsbruck Medical University
• Massachusetts General
• University of Pittsburgh
• University of Virginia at Charlottesville
• Barrow Neurological Institute
• Thomas Jefferson University Hospital

To learn more about the RLS Quality Care Center Program, visit www.rls.org/quality-care-centers.

About the RLS Foundation

The Restless Legs Syndrome Foundation is dedicated to improving the lives of all who live with restless legs syndrome (RLS). Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and advance research to find a cure. The Foundation serves healthcare providers, researchers, over 6,000 members, and an estimated 12 million individuals in the United States who have the disease. The Foundation’s Research Grant Program has awarded over $2 million in funding for medical research on RLS causes and treatments. For more information, visit www.rls.org.

CONTACT
Adrianna Colucci
Communications and Marketing Coordinator
adrianna@rls.org
512-366-9109