Friday, August 07, 2026
RLS Foundation and AASM Foundation Announce 2026 Research Grant Awardees August 7, 2026 The Restless Legs Syndrome (RLS) Foundatio...
RLS Foundation and AASM Foundation Announce 2026 Research Grant Awardees
August 7, 2026
The Restless Legs Syndrome (RLS) Foundation and the AASM Foundation are pleased to announce the recipients of the 2026 RLS Foundation research grant awards. These grants support innovative scientific studies aimed at advancing understanding, diagnosis and treatment of restless legs syndrome.
This year, two research projects have been selected for co-funding. This funding is made available through the RLS Foundation’s Research Grant Program, which has awarded over $2 million in grants for RLS research since 1997. The AASM Foundation and RLS Foundation have partnered to co-fund awards through the RLS Foundation Research Grant Program since 2023.
"The AASM Foundation is proud to continue its partnership with the RLS Foundation to fund high-impact research that addresses critical gaps in our understanding of restless legs syndrome," said Dr. Lynn Marie Trotti, president of the AASM Foundation. "These innovative projects have the potential to advance scientific knowledge and improve the quality of life for individuals living with RLS, and we are excited to support the investigators driving this important work forward."
RLS is a chronic neurological disease characterized by an irresistible urge to move the legs, especially at night. Many people with RLS endure unrelenting symptoms that severely disrupt sleep and can have a devastating impact on their well-being. An estimated 7–8% of adults in the United States have RLS, treatments are limited and there is no cure.
"We are honored to continue our partnership with the AASM Foundation in support of researchers working to improve the lives of people affected by RLS," says RLS Foundation Executive Director Karla Dzienkowski. "Together, we are advancing our shared commitment to accelerate progress in advancing our understanding and treatment of sleep disorders."
Please Join Us in Congratulating the 2026 Grant Recipients
2026 Co-Funded Grant Recipients
Kondaiah Palsa, PhD
Penn State University
Grant Title:
miR-124-3p Signaling from activated microglia drives brain iron uptake dysregulation in restless legs syndrome
Sergi Ferré, MD, PhD
National Institutes of Health (NIDA)
Grant Title:
Putative role of striatal presynaptic dopamine D4 receptors in the pathogenesis of restless legs syndrome and on the therapeutic effect of pramipexole
The RLS Foundation also agreed to solely fund a third proposal, that aims to better our understanding of RLS. Please join us in congratulating the following.
2026 Funded Grant Recipient by the RLS Foundation
Emmanuel Mignot, MD, PhD
Stanford University
Katie Cederberg, PhD
Stanford University
Grant Title:
Proteomic approach to understanding the mechanism of action for exercise as a non-pharmacological management method in RLS: A Pilot Study
The RLS Foundation Research Grant Program calls for grant proposals of a one-year duration, with funding levels of up to $50,000. Interested applicants may submit a letter of intent beginning in December. Selected applicants will be invited to submit a full application. More details and application instructions are available on the RLS Foundation website.
For more information about the RLS Foundation or current research initiatives, visit www.rls.org. To learn more about the AASM Foundation's research and funding opportunities, visit foundation.aasm.org.
About the RLS Foundation
The RLS Foundation is dedicated to improving the lives of the millions who live with restless legs syndrome. Founded in 1992, the Foundation's goals are to increase awareness, improve treatments and advance research for a cure. The Foundation serves healthcare providers, researchers, 6,000 members and an estimated 12 million individuals (10 million adults and 1.5 million children) in the United States who have RLS.
About the American Academy of Sleep Medicine Foundation
The AASM Foundation is the philanthropic organization of the American Academy of Sleep Medicine. Our values, programs and purpose are focused on investing in people, research and communities to improve the sleep health of all people. Since 1998, the AASM Foundation has distributed more than $31.5 million in grants and awards that are making a critical impact in improving sleep health. Learn more at foundation.aasm.org.
Media Contacts
RLS Foundation
Karla Dzienkowski, RN, BSN
Executive Director
Restless Legs Syndrome Foundation
karla@rls.org
512-366-9109
AASM Foundation
Kate Robards
Senior Writer
media@aasm.org
630-737-9738
Tips from Our Readers: How to Give and Receive Support
Monday, July 13, 2026July 14, 2026 Tips from Our Readers: How to Give and Receive Support With a chronic condition like restless legs syndrome (RLS)...
Tips from Our Readers: How to Give and Receive Support
With a chronic condition like restless legs syndrome (RLS), having a strong support system can make a tremendous difference. NightWalkers invited members of the RLS community to share the ways they receive support from their loved ones. Thank you to everyone who submitted responses and shared their experiences.
Tips From Those Who Live with RLS
My husband often brings me my medications or asks if I've taken them. If I'm more tired than usual, he doesn't push or ask me to do anything that takes extra effort or energy. He also encourages me to sleep late in the morning when I need the rest.
— Barbara
During my worst nights with RLS, when my legs ached and jumped all night long, my husband stayed awake with me, massaged my legs and alternated between warm socks and ice packs. Sometimes I could finally fall asleep while he was massaging my legs. I don't know what I would've done without him.
— Susan
I am amazed at my husband's ability to notice the little nonverbal cues that I'm struggling, especially during road trips. He willingly takes the next exit so I can get out and walk around for a while.
— Julie
My husband supports me simply by being there. He has an endless capacity to listen as I talk about my restlessness and my search for the right medication. He also supports meal planning around my trigger foods, and he's the advocate I know I could rely on if I were ever hospitalized.
— Constance
My partner is patient, understanding, offers kind words of encouragement and walks with me whenever my symptoms flare.
— Tom
My husband understands RLS and my frustration when symptoms flare despite my medication. He encourages me to use remedies that bring relief and always responds with empathy.
— Janice
My wife keeps track of my medication schedule, encourages healthier eating, massages my legs during severe episodes and reminds me to maintain good sleep habits. She's my advocate and my rock.
— Marc
On car trips, my husband knows when my RLS is acting up and, without my even asking, pulls over somewhere safe so I can walk. He's even walked laps with me in our driveway in the middle of the night during particularly difficult nights.
— Sue B.
My wife is very patient with me and understands when I've had a bad night. She encourages me to catch up on sleep when I need it.
— Brian
He has bought me leg massagers, and sometimes he becomes the leg massager himself. When we travel, we book larger rooms so I have space to move around if necessary. Most importantly, he supported my decision to retire in my 50s.
— Suzie
When she sees me in distress, she'll try anything to help, including cold packs on my knees, a cool cloth on my forehead and other suggestions. She knows hot weather often makes my symptoms worse.
— Judith
My loved one never complains when I need to walk around during the night or turn on music to help distract me.
— Nancy
My wife lets me catch up on sleep during the day whenever I need it and is always supportive in my search for better treatment.
— Steven
My husband didn't understand RLS at first, but over time he's come to truly appreciate how difficult it is. He reminds me to pack enough medication before trips, understands why I need an aisle seat, follows RLS research and even supports the Foundation with donations.
— Andrea
Walks with me at 2:00 a.m. whenever I need it.
— Sally
Tips From Those Who Support Someone with RLS
It is painful to watch my wife suffer from RLS symptoms. She is incredibly tough and resilient, but when symptoms overwhelm her and she has to walk around the house or exercise until they settle, I often feel helpless. The best thing I can do is let her know I understand and that I'm there for her.
— Janice's husband
There is very little I can do except let her know that I understand. I only wish I could do more.
— Julie's husband
Share Your Story
Every person's experience with RLS is unique, but sharing our stories helps others feel understood and less alone. Thank you to everyone in our community who continues to encourage, support and inspire others living with restless legs syndrome.
How to Build a Strong Support System
Monday, July 13, 2026July 13, 2026 How to Build a Strong Support System By Elyse Hopfe, RLS Foundation Program Coordinator Dealing with the emo...
July 13, 2026
How to Build a Strong Support System
By Elyse Hopfe, RLS Foundation Program Coordinator
Dealing with the emotional and physical hardships of having a sleep disorder like restless legs syndrome (RLS) is nearly impossible to do on your own. Seeking support from others does not make you weak—it makes you stronger.
Once you find that person, whether it be a doctor, partner, friend or family member who understands your journey with RLS, they can seem like your anchor to reality. However, support systems work best as webs of many individuals or communities. Even if your "number one" supporter offers to support you in all aspects of RLS, having an established network comprised of loved ones, professionals and community members can greatly reduce stress for everyone involved.
It can be daunting to create a support system for yourself while experiencing a disease that makes you feel so alone. To make sure that you cover several types of support, consider these practical ideas for creating or strengthening your support system:
1. Meet People Who Understand
Having people who can celebrate your wins and share your sorrows with this disease is a very important part of finding support. The RLS Foundation is dedicated to sustaining a network of caring volunteers who empathize with the hardest parts of living with restless legs syndrome. The Foundation provides opportunities for anyone in the world to connect with a volunteer, either one-on-one or in a group setting.
2. Find a Good Listener
If you find someone who is easy to say the hard things to, they might make a great addition to your support system. Even if you can only talk to them over the phone from time to time, having someone who invests emotional energy in your situation can be a great source of comfort.
It is important to ask for consent before sharing your thoughts and to confirm that they have the emotional capacity and time to listen. This person could be a loved one, a friend from the RLS community or someone from your church, workplace or another trusted group.
3. Find a Physical Helper
This role is different from the "good listener." Physical helpers can assist you through days and nights affected by poor sleep by driving you to appointments, helping prepare meals or researching treatment options when medication names begin to blur together.
These supporters usually live with or near you. While they may also provide emotional support, it's helpful if they are not solely responsible for meeting both your physical and emotional needs around the clock. Very few people have the capacity to do that long term.
4. Find a Healthcare Professional Who Cares
Unfortunately, RLS is often dismissed, misunderstood or inadequately addressed by healthcare professionals. Fortunately, there is a growing community of clinicians who are committed to providing evidence-based RLS care and staying current on treatment guidelines.
Many of these providers have completed certifications through the RLS Foundation to become RLS Quality Care Centers. You can locate participating providers by visiting www.rls.org.
Building Your Support Team
The people you gather to build an effective support system may have qualities or responsibilities that overlap, and that's perfectly natural. The key is to create a team made up of individuals who fill different roles.
Finding both a compassionate healthcare provider and someone who truly understands the challenges of living with RLS is invaluable. Likewise, having separate people who can drive you to appointments, listen when you're struggling and offer practical help can make an enormous difference.
What matters most is knowing that you have multiple people you can lean on throughout your journey.
Need Someone Who Understands RLS?
If you're looking for someone who understands restless legs syndrome to add to your support system, the RLS Foundation can help connect you with a caring volunteer.
Email us at info@rls.org to get connected.
Learn more at www.rls.org.
Q&A With Advisory Board Member Dr. Rochelle Zak
Monday, May 04, 2026Q&A With Advisory Board Member Dr. Rochelle Zak Rochelle Zak, MD is an RLS specialist who is board-certified in sleep medicine and n...
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.
RLS and Mental Health: Q&A with Dr. Brian Koo
Tuesday, April 14, 2026April 14, 2026 RLS and Mental Health: Q&A with Dr. Brian Koo Brian Koo, MD, is the director of the Yale Center for Restless Le...
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.
Q. How can I tell if my bad mood is depression or just a bad mood?
Dr. Koo: It’s normal to occasionally experience a bad mood. People’s moods are generally the lowest in the morning, but a combination of waking up, moving around, socializing and doing work will increase their mood. However, if the feeling of low mood is pervasive, lasts more than at least two weeks and is affecting your ability to function at work, home or school, you should speak to your physician about signs of depression.
Q. Why do I experience a sense of doom and gloom when I’m woken up for a second time during the night with RLS?
Dr. Koo: There could be a number of possibilities. Nighttime is lonely – most people are asleep, so there’s a general sense of isolation when one is woken up. The anticipation of the next morning’s responsibilities, such as going to work or school, may contribute to the “doom” sensation. Some medications commonly used for RLS, such as methadone or buprenorphine, can cause a sense of doom, so be sure to consult with your physician.
Q. Are mood swings a common side effect for some of the medications that are commonly used for RLS?
Dr. Koo: Nearly any of the medications used commonly to treat RLS – gabapentinoids, dopamine agonists, opioids – can potentially cause depression as a side effect. It’s also important to consider that dopamine agonists can cause impulse control disorders – such as compulsive gambling, eating or shopping – that can impact someone’s mood.
Q. Can the use of buprenorphine or other low-dose opioids cause sleeplessness when used to manage RLS?
Dr. Koo: Nearly all medications can cause sleeplessness, but opioids may be more likely to do so. It is not uncommon to treat someone for augmentation with a low-dose opioid, which effectively manages the RLS symptoms but simultaneously causes sleeplessness. In that instance, I may try to treat the patient with a different opioid or add a hypnotic like zolpidem. It is also important to look for other triggers such as alcohol use, caffeine intake or comorbid conditions such as sleep apnea.
Q. Some days I get eight hours of sleep. Other days, only three or four. How does inconsistent sleep time affect someone’s mood?
Dr. Koo: Being well rested means having more reserve to do the activities that can increase your mood – socializing, hobbies, exercise, artistic endeavors, etc. Inconsistent sleep can make enjoying these activities much more difficult. If your RLS medication is not effectively managing your RLS and your provider has investigated potential triggers, comorbidities and optimal iron status, talk to your provider about adjusting the dose of the RLS medication or adding a hypnotic.
To view Dr. Koo’s webinar or other previously recorded webinars, log into your member portal at rls.org/login-member. Our expert-led monthly webinars are free to join live and offer critical information on topics relevant to the RLS community. Visit rls.org/attend-events to register.
Finding Steadiness During Seasonal Blues
Wednesday, April 01, 2026April 3, 2026 Finding Steadiness During Seasonal Blues By Elyse Hopfe, RLS Foundation Program Manager Often, as th...
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.
Mental Health Resources
If you are in crisis or experiencing suicidal thoughts, help is available 24/7 from trained counselors at the Suicide and Crisis Lifeline. Call or text the 988 Suicide and Crisis Lifeline by dialing 988 or chat online by visiting 988lifeline.org.
Further mental health resources are available through:
Sources
Kasper S, Wehr TA, Bartko JJ, Gaist PA, Rosenthal NE. Epidemiological findings of seasonal changes in mood and behavior. A telephone survey of Montgomery County, Maryland. Arch Gen Psychiatry. 1989;46(9):823-833. doi:10.1001/archpsyc.1989.01810090065010
Advocacy Action Alert: Include "Sleep Disorders and Restriction" in the DOD PRMRP
Wednesday, April 01, 2026April 1, 2026 Advocacy Action Alert: Include "Sleep Disorders and Restriction" in the Department of Defense Peer-Reviewed...
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)
RLS Foundation Certifies Chase Family Movement Disorders Center as a QCC
Tuesday, March 31, 2026April 1, 2026 RLS Foundation Certifies Chase Family Movement Disorders Center as a QCC As an RLS Quality Care Center, the ...
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
Commonly Used Rating Scales in RLS Research
Wednesday, January 28, 2026January 28, 2026 Commonly Used Rating Scales in RLS Research Research related to RLS often relies on questionnaires and ra...
January 28, 2026
Commonly Used Rating Scales in RLS Research
Research related to RLS often relies on questionnaires and rating scales to provide objective clinical data. These tools provide a baseline to help researchers and clinicians assess clinical diagnoses and evaluate symptom severity, treatment effectiveness and patients' physical and emotional well-being. Understanding these scales can make it easier to interpret published research findings and clinical results.
International RLS Study Group Score (IRLS)
The International Restless Legs Study Group (IRLSSG) developed and validated a 10-item rating scale to indicate how symptoms have affected a patient over the course of one week. This test is administered by a physician, but answers are self-reported by the patient. Each of the 10 questions asks the respondent to rate their experiences with RLS on a scale from 0 (no symptoms) to 4 (severe and frequent symptoms), producing a total score between 0 and 40. Generally, scores in the range of 1–10 correspond to mild RLS, 11–20 to moderate, 21–30 to severe, and 31–40 to very severe RLS.
How is it used? The IRLS is a commonly administered questionnaire used in research and clinical practice to rate the severity of RLS symptoms and can be used to help determine the best course of treatment for RLS patients.
RLS-6 Scale
The RLS-6 scale measures the impact of RLS on daily life. This 6-item questionnaire evaluates questions on a scale from 0 to 10, with higher numbers indicating more severe RLS. The questions ask for individuals to rate satisfaction with sleep and severity of symptoms while falling asleep, during the night, during the day while sitting or lying, and during the day when moving around.
How is it used? The RLS-6 is an instrument to assess RLS severity within specific and pragmatic parameters. It can be used to supplement the IRLS.
Cambridge-Hopkins Diagnostic Questionnaire (CH-RLSq)
This questionnaire is a validated diagnostic tool used by physicians to assess and identify RLS. The questions address basic diagnostic features of RLS such as frequency and timing of symptoms, relief of symptoms with movement, and impact on daily life or sleep patterns.
How is it used? The CH-RLSq is commonly used in research to validate RLS diagnoses and differentiate RLS from conditions with similar characteristics.
Suggested Immobilization Test (SIT)
The SIT is a validated tool that assesses leg discomfort and leg movements during a 60-minute period. The test is administered in the evening in a clinical setting. Participants recline at a 45-degree angle with legs outstretched and are instructed to avoid voluntary movement for the duration of the test. The test records surface electromyograms from the anterior tibialis muscles to detect leg movements. A high number of leg movements during the test may help differentiate patients with RLS from those without RLS.
How is it used? The SIT provides a standardized testing condition to measure the severity of RLS symptoms by quantifying leg movements and subjective discomfort. This test is often used to determine whether potential treatments might be helpful to treat RLS symptoms.
Pittsburgh Sleep Quality Index (PSQI)
This validated questionnaire is administered by a physician and evaluates overall sleep quality over a one-month period. The questions fall into seven categories: subjective sleep quality, sleep latency, sleep duration, habitual sleep efficiency, sleep disturbances, use of sleeping medication, and daytime dysfunction. Five additional questions rated by the respondent’s roommate or bed partner are included for clinical purposes but are not scored. Each question is scored from 0 to 3, with higher scores indicating greater sleep disturbances.
How is it used? The PSQI may be helpful during RLS research studies to determine the effectiveness of medications, interventions and other therapies for improving sleep.
The World Health Organization-5 Well-Being Index (WHO-5)
This questionnaire evaluates five statements to measure mental well-being over two weeks. Statements are rated on a 6-point scale, with higher scores indicating better mental health.
How is it used? The WHO-5 may be used in RLS research to study the relationship of RLS and mental health or to examine mental health outcomes based on treatment response.
Thankuary: A Month of Gratitude from the RLS Foundation
Thursday, January 08, 2026January 8, 2026 Thankuary: A Month of Gratitude from the RLS Foundation January is Thankuary - a campaign that emphasizes...
January 8, 2026
Thankuary: A Month of Gratitude from the RLS Foundation
January is Thankuary - a campaign that emphasizes appreciation and gratitude following the busy holiday season. During Thankuary, we take time to recognize the incredible people who make our mission possible. Every step forward in awareness, education, advocacy and research happens because of a community that shows up with compassion, devotion and hope.
To our members, thank you for being the heart of our community and for trusting us with your stories, your voices, and your continued support.
To our volunteers and Board of Directors, we extend our deepest thanks to those who generously give their time, talents and leadership to support our work in so many ways.
To the healthcare professionals on our Scientific and Medical Advisory Board and Quality Care Center certified clinicians, we are thankful for your expertise and compassionate care for people living with RLS.
And to the RLS Foundation advocates and staff, we are profoundly grateful to your commitment to improving the lives of those living with this often-devastating condition.
Thankuary is a reminder that none of this work happens alone. Follow us on social media as we highlight our community throughout this month on Facebook and Instagram. Together, we are building a stronger, more informed, and more hopeful future for everyone affected by RLS. Thank you for being part of the RLS Foundation community.
Hill Day 2026 FAQ
Tuesday, January 06, 2026January 6, 2026 Hill Day 2026 FAQ The RLS Foundation is hosting its annual Hill Day event on Monday, March 23. Hill Day is an opp...
Hill Day 2026 FAQ
The RLS Foundation is hosting its annual Hill Day event on Monday, March 23. Hill Day is an opportunity to unite with fellow RLS community members to meet with legislative staffers and advocate for key issues. This is an all day in-person event, coordinated with the Health and Medicine Counsel of DC (HMC), an organization that guides the Foundation's advocacy efforts. We'd love to have you join us on Capitol Hill! Read through the FAQ below, or please email adrianna@rls.org with additional questions or concerns.
Agenda: Monday, March 23, 2026*
8:00 AM: Welcome Session at Health and Medicine Counsel: 50 F St NW, Suite 730, Washington, DC
8:45 AM: Walk to US Capitol Hill for group photo
9:15 AM: Walk to Russell Senate Office Building: 2 Constitution Ave NE, Washington, DC
9:30 – 12:00 PM: Senate Meetings
12:00 - 1:00 PM: Lunch in Senate Building Basement Cafeteria
1:00 PM: Walk to Rayburn House Office Building: 45 Independence Ave SW, Washington, DC
1:30 - 4:00 PM: House Meetings
4:00 PM: Debrief
*This schedule is tentative and may change based on office availability.
Preparation
What are we advocating for?
Put simply, we are advocating for increased funding for RLS research, enhanced awareness and education, and protected access to crucial therapies for refractory RLS which may include opioids. See the legislative agenda for details.
What should I bring with me?
A valid ID is required to enter all government buildings. Bring any notes you have prepared to share with legislators. You can take a small bag with your wallet, ID, camera, portable phone charger, or other personal effects. Water and unopened snacks are permitted inside the building. Prohibited items include perfumes, pepper spray, aerosol containers, weapons, backpacks, and suitcases as you will have to go through security.
What is the dress code?
Business casual attire is appropriate. Wear comfortable shoes as you will be walking/standing for most of the day.
The Restless Legs Syndrome Foundation is a nonpartisan organization. We are fortunate to have strong working relationships with both sides of the aisle that has resulted in continued advocacy success for our community. To maintain a nonpartisan and professional environment during our hill day, please refrain from wearing clothing or accessories with political slogans or affiliations.
What is the Health and Medicine Counsel (HMC)?
The Health and Medicine Counsel of Washington is a government relations organization that works with nonprofit organizations and companies in the healthcare industry. HMC guides our advocacy efforts, including coordinating congressional meetings.
Will I receive training prior to meeting with representatives?
There are advocacy materials available on our website under the “Advocacy” Tab. On Monday morning there will be a welcome session with HMC representatives who will prepare you for the day.
How can I prepare for Hill Day?
Step 1: Register at: www.rls.org/hill-day. Registering in advance allows our HMC representatives to target legislators in your state and district.
Step 2: Create your story. Meetings with representatives will be brief, so preparation is key. Representatives want to hear why the policies they pass impact their constituents.
Step 3: View our advocacy resources under the “Advocacy” Tab at www.rls.org.
Step 4: Plan your travel including hotel reservations, car rentals, public transportation, or other necessary details.
What To Expect
This is my first time participating in any type of advocacy work- what should I expect?
Advocacy can seem daunting, but it will not take you long to gain confidence! You will feel a sense of unity among the members of your group knowing you have a collective mission and a sense of empowerment by being a voice for those who cannot be there.
The HMC will coordinate meetings in advance, but you will receive your schedule the day of. You will likely meet with 5-7 offices. An HMC representative will guide your group through the meetings.
Your group may include an RLSF employee, a Board member, an RLS expert, other RLS members and an HMC representative.
Who do we meet with?
You will meet with legislative staffers who are responsible for listening, asking questions and taking notes during the meeting. Legislative staffers are essential in helping legislators make informed decisions and effectively serving constituents.
How is each meeting structured?
You will meet with a representative from each office who is there to listen and take notes. These meetings last about 15-20 minutes. Do not be surprised if your meetings take place in a conference room, the office lobby, or even the hallway!
After introductions, an RLSF representative will explain what RLS is and what the RLS Foundation does. You will then share your story in 2-4 minutes. The HMC representative will end with our legislative priorities and request their support. The flow of your meeting will happen naturally, as your group learns how to bounce off each other’s statements.
What is my role in this meeting?
Statistics and numbers only go so far- the most impactful statements come from those who live with RLS and can provide context for the adversities faced by the community. Prepare your story in advance, as you will have 2-4 minutes to share.
How much walking is required?
Please note that congressional buildings are quite large and navigating them will involve a significant amount of walking. Based on past events, on average you will be walking six miles in total. We recommend wearing comfortable shoes and being prepared for an active day. If you have any walking impairments or mobility concerns, we recommend planning ahead to ensure a comfortable experience.
Travel
Where do we meet?
We will meet at the HMC Headquarters located at 50 F St NW, Suite 730 Washington, DC 20001.
I am commuting by car. Where can I park?
The closest parking structure is Market Square Parking Garage located at 701/801 Pennsylvania Avenue NW. It is about a 20-minute walk to the meeting area. You can reserve parking tickets in advance.
Can I commute by train?
Yes, the HMC office is just a short walk from Union Station.
What hotels are in the area?
There are many hotels in the area, both within walking distance and driving distance of HMC Headquarters.
Options within walking distance:
- Phoenix Park Hotel: 520 N Capitol St. (2 min walk)
- Hilton Washington DC Capitol Hill: 525 New Jersey Ave NW (3 min walk)
- Kimpton George Hotel: 15 E St. NW (3 min walk)
Options within driving distance:
- Hilton Garden Inn: 2020 Richmond Highway Arlington (12 min drive)
- Lyle Hotel: 1731 New Hampshire Ave NW (15 min drive)
- Cambria Hotel Capitol Riverfront: 69 Q St SW (10 min drive)
- State Plaza Hotel: 2117 E St NW (15 min drive)
- Hilton Washington DC National Mall The Wharf: 480 L'Enfant Plaza SW (10 min drive)
You may need to consider car rentals or ride-sharing services as a form of transportation. Be sure to reserve all accommodations in advance!


