Restless Legs Syndrome Foundation Blog

RLS Foundation and American Academy of Sleep Medicine Foundation Announce 2025 Research Grant Awardees

August 4, 2025

Join the RLS Foundation Board of Directors

Shape the future of RLS advocacy and research

The RLS Foundation is seeking passionate, committed individuals to join our Board of Directors. Board members have the unique opportunity to guide the strategic direction of the Foundation, support its mission and directly contribute to improving the lives of individuals living with RLS.

Board members play an essential role in governance, advocacy, fundraising and outreach. The Foundation relies on its board to provide thoughtful leadership, expand our outreach and ensure we remain a trusted voice for the patient and medical community. We welcome applicants who bring clinical expertise, lived experience with RLS, nonprofit leadership, or who have a background in business, law, finance or communications. Many of our Board members have been diagnosed with RLS or are RLS physicians, however this is not a requirement.

Board service is both a responsibility and a privilege. In addition to participating in board meetings (virtual and in-person), members are expected to serve on at least one committee and actively support the Foundation’s programs and goals. This includes contributing time and resources and acting as an ambassador for the Foundation within your professional and personal networks.

Serving on the RLS Foundation board is a meaningful way to give back and to join a dedicated team working to advance understanding, improve care, and ultimately find a cure for RLS. If you are interested in learning more about board membership, please contact info@rls.org for more information.

2025 Hill Day FAQ

The RLS Foundation is hosting its annual Hill Day event on Monday, October 6. 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, October 6, 2025*

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/hillday. 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!

Welcoming the RLS Foundation's New Board Chair

The RLS Foundation is pleased to announce that Jeffrey Durmer, MD, PhD, has been elected chair of the Foundation’s Board of Directors. Dr. Durmer joined the Board in 2019 after serving nearly 10 years on the RLS Foundation Scientific and Medical Advisory Board. He is a systems neuroscientist, neurologist and sleep medicine physician with expertise in technology-enabled sleep-health delivery systems. He is the chief medical officer of Absolute Rest, where he oversees the development of innovative technology-enabled precision medical and behavioral programs designed to enhance human health, longevity and performance. He is also the telemedicine principal investigator for the Sleep SMART clinical trial, the largest sleep apnea and stroke study funded by the National Institutes of Health (NIH). His past research spans from uncovering the neuroanatomical and neurophysiological substrates of subcortical visual systems involved in blind sight, to developing the first standardized clinical interview tool for pediatric restless legs syndrome.

Q: Thank you for giving us the opportunity to introduce you as the Board Chair of the RLS Foundation! How did you become involved with the Foundation?

I first became involved with the RLS Foundation as a researcher at Emory University. At the time, I was directing the Emory Pediatric Center and the adult sleep laboratory, working to identify various RLS phenotypes with Emory’s Clinical Research in Neurology (CRIN) Program and collaborating with the Decode Project in Iceland.

I was working with Dr. David Rye and Dr. Don Bliwise, who introduced me to the RLS Foundation’s Research Grant Program, which has funded over $2 million in research to date. I thought it could be a great opportunity to fund research characterizing the phenotypes of children with RLS and further understand the relationship between RLS and ADHD. I submitted an application and became an RLS Foundation Research Grant recipient in 2005. During that period, I had a research poster featured at the annual American Academy of Sleep Medicine meeting, where I met Karla Dzienkowski, who is now the RLS Foundation executive director. Karla’s interest in pediatric RLS research led to multiple discussions, and she persuaded me to join the Foundation’s Scientific Medical Advisory Board (SMAB). I worked on the SMAB for eight years, helping support the Foundation’s work in pediatrics.

Q: In October 2024, you became the new Board chair. What are some of your responsibilities in this role?

The RLS Foundation is a dynamic and fluid organization, responsive to the needs of people with RLS. We are an advocacy organization, first and foremost, which includes funding pilot projects to advance research into multiple aspects of RLS, providing education and support programs for patients and families, representing the interests of patients, researchers and clinicians, and helping governmental agencies from the NIH to Congress understand the importance of addressing this very common condition and its associated medical comorbidities. As chair, my role is to create clarity and ensure our actions are reflective of our values and mission. My goals for the Foundation are to help it embrace technological and organizational innovation to grow our audiences, refine our financial efficiencies, and improve connectivity between RLS researchers, clinicians, patients and their families.

As someone with extensive experience managing businesses, clinical laboratories and healthcare operations, I look forward to guiding the Board toward a sustainable structure that supports continued growth throughout and after my term.

Q: Do you believe that your previous work on the SMAB complemented your role on the Board?

Absolutely. In addition to understanding the work of the Board of Directors, I understand the pressures the researchers and clinicians on our SMAB face – both in their practice and on behalf of the organization. I believe there needs to be a transparent and dynamic relationship between the SMAB and Board of Directors to foster collaboration and sustained proactive organizational growth in the future.

I also want to identify how the Board can assist Karla and the Foundation in their work with the SMAB. The more proactive we become, the less reactive we will need to be within the Foundation when issues arise.

Q: What led to a specific interest in RLS?

I was recruited from the University of Pennsylvania to the Department of Neurology at Emory University. My previous work focused on the consequences of sleep deprivation, the individual variability of the impact of sleep disorders on health and function, and the neuroanatomical structures involved in normal and pathological sleep.

When I got to Emory, I found that the team was more focused on movement disorders, so I made a decision to learn more about the basic science and the animal modeling associated with RLS. I found a clinical “missing link” within pediatric RLS. While there were publications and some research being conducted, there was no standardized way to diagnose and treat RLS in pediatric populations. I decided to switch my focus from cognition and the neurocognitive consequences of sleep deprivation and performance to RLS in children.

Q. What is your advice for those struggling with RLS?

Know that you are not alone. Your symptoms are shared by millions of other people. By joining the RLS Foundation, you will find a community of people going through similar experiences who can provide hope.

Membership to the Foundation not only connects you with a support network, but also keeps you informed on the latest RLS research and news. As we know, being part of a community promotes mental and physical health, and when that community is focused not only on connectivity but also creating solutions to a major health issue, it serves you, your family and the rest of humankind.

The full interview with Dr. Durmer is available in the Winter 2025 edition of NightWalkers, our quarterly magazine. You can access the complete article by logging into the member portal of the RLS Foundation website. If you are not yet a member, we invite you to become one today by visiting www.rls.org/joinnow.

Welcoming The RLS Foundation's Newest Team Member!

Elyse Hopfe is a recent graduate of the University of Texas at Austin, where she earned her degree from the Stan Richards School of Advertising & Public Relations. During her academic years, Elyse developed a strong foundation in strategic communication, public engagement and community outreach. She has extensive experience facilitating both group and individual peer support meetings, with a strong emphasis on mental health and wellness. Elyse joined the RLS Foundation as Program Manager in May, where she will oversee several key initiatives, including the Foundation’s volunteer support network, social media, webinar series and other outreach programs aimed at supporting individuals affected by RLS. Her passion for advocacy and communication will be instrumental in expanding the Foundation’s reach and strengthening its connection to the RLS community.

How were you introduced to the RLS Foundation and what sparked your interest in pursuing a position here?

I was introduced to the RLS Foundation through a job listing that one of my UT professors sent me. I applied as quickly as I could when I found out that I could make a difference for RLS patients using health communication. I know by experience the difficulty of living with a chronic condition, and I know that feeling less alone is a tether of support that I want to always provide people with. Once I met and shared stories with the kind and passionate RLSF staff, I knew that the position was meant for me.

Based on what you’ve learned about RLS at this point, why do you feel it is important to increase awareness of the disease?

I am still discovering more and more about RLS every day, but I know that increasing awareness is essential because of how much life-changing progress is yet to be made. By hearing the stories of RLS sufferers and watching doctors recount their extensive research and experience in treating RLS patients, I learned the absolute necessity of making things better for those with RLS, which starts with making the rest of the world listen. The RLS Foundation has such an impactful history surrounding its growing community, and increasing awareness about the disease will lead to more discoveries and discussions for everyone who becomes involved.

What influenced your passion for mental health and wellness advocacy? What practices or philosophies do you want to integrate into the support meetings hosted by the Foundation?

My passion for mental health and wellness advocacy derives originally from my own battle with mental health, but it has since evolved after my collective volunteer experience leading both group and individual support. Having a therapist can be amazing, but there is a differently beautiful and powerful connection to be gained from supporting and receiving support from fellow community members who have shared your experiences in a non-clinical environment. Talking circles are an ancient practice from Indigenous cultures, including those in Canada and in the US, and I want the restorative effects of support groups to be recognized as a gift from that learned practice. As the manager of the volunteer support program at the Foundation, I want all of our support spaces to be nonhierarchical, to feel safe for leaders and attendees, and to be inclusive for anyone seeking support for their lived experiences with RLS.

What aspects of the RLS Foundation’s mission resonate most with you?

I really resonate with the action-oriented idea behind our mission. The Foundation is not passively existing to host the connections within the RLS community, but it is alive and working to make change for people who have the disease through advocacy, research, and overall education and awareness. I want to be the change, not just someone witnessing it.

What are you most excited about in your new role as program manager?

I am most excited to get to know you: whoever is reading this. I am very willing to learn more personal stories about what living with RLS can be like and I want to be extra informed when I get to contribute to exciting things like our monthly webinars, social media, and chats with support group leaders, too.

What would you like volunteers and community members to know about you as you get started?

I want everyone to know that while I do not experience RLS myself, I am devoted to amplifying the voices of the people that do. I will surely make mistakes as I acclimate to my role at the Foundation but rest assured, I am open to reframing how I navigate the complexities involved with providing the best experience for all volunteers and community members at RLSF. Please reach out to me at elyse@rls.org if you want specific resources or if you feel inclined to get to know me a bit better. I am very grateful to be part of this very personal mission.

Outside of work, how do you like to spend your time?

I absolutely love the Texas heat, and I very often swim or walk outdoors. I am an avid reader, thrifter, and video editor when I’m not spending time with my friends. My nightly routine often includes cooking something nostalgic with my television playing in the living room. Recently, I’ve been teaching myself how to play bass guitar, but I’ve never played for an audience!

Do you have a favorite quote or motto that inspires your work?

A motto that I have internalized from yoga class is “kind mind, kind body, kind spirit.” Whenever I feel lost, or purposeless, or not good enough, I remind myself that acting through kindness will result in work that is honest and true.

Advocacy Action Alert: Sign-On Letter for the Sleep Community

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: Congresswoman Zoe Lofgren (D-CA) is leading the annual appropriations sign-on letter for Fiscal Year (FY) 2026, calling for enhanced support for sleep health and medical research activities. The letter encourages further coordination and new initiatives across the Department of Health and Human Services so that ongoing breakthroughs in medical research are connected with earlier diagnosis, better patient care, and enhanced professional education and public awareness.

Why It’s Important: This letter is open for congressional House members. Increased support from House representatives improves the likelihood that sleep-related recommendations will be incorporated into the final appropriations legislation. Your member of Congress will only sign on to the letter if they are asked to do so by you, their constituent.

Request: Please contact the office of your House Representative and ask that they continue to support the sleep, circadian, and sleep disorders medical research and public health priorities by joining the community’s annual appropriations letter.

Steps to Take Action:

*Complete Step 1 as soon as possible, as you will need the contact information before completing the rest

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

Email Subject Line: Congressional Sign-On Letter - RLSF

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

3. Email the Health Legislative Assistant, when you receive their contact information, using the sample message below. Please copy and paste the message below into an email, as the representatives will need the link to sign-on. Attach the sign-on letter that you downloaded to the email.

**Sample Message**

Dear [Staffer Name],

I am reaching out today as an advocate for the sleep disorders community and as a constituent from [your hometown]. On behalf of local advocates impacted by restless legs syndrome, I hope your office will join the annual appropriations letter in support of timely report language focused on sleep research and public health activities. The FY 2026 letter is attached and you can complete this form via Quill or contact Arlet Abrahamian at Arlet.Abrahamian@mail.house.gov. Thank you for your time and for your consideration of this request. Please sign on by Friday, May 16th.

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

Thank you for your time and your consideration of this request. I look forward to hearing from you in this regard.

Sincerely,

[Name]

[Address]

****

*Please Note: The “quill” link in the sample message will only work for congressional offices (individuals and organizations cannot use it to sign the letter). If you copy and paste the message into an email, the link should be included. The link is also embedded in the sign-on letter.

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.

Boost Your Mood: How Dance Can Improve Mental Health

Whether you’ve danced alone in your car to your favorite songs, swayed with your partner on the dance floor at a wedding or initiated a spontaneous dance party at a family celebration – you’ve experienced firsthand the positive effects dance can have on mental health.

For individuals with RLS, research suggests that an active lifestyle can be an effective tool for managing symptoms. Finding enjoyable and safe activities that also have psychological benefits can further enhance quality of life.

Movement in general has been shown to reduce stress, increase energy and promote a sense of calm. On a biological level, exercise reduces the body’s stress hormones, such as adrenaline and cortisol, while also stimulating the production of endorphins.¹ Endorphins are hormones released when the body experiences pain or stress.² They act as a neurotransmitter, blocking the nerve cells that receive pain signals. Endorphins also stimulate the release of dopamine, another neurotransmitter that plays a role in mood. An endorphin deficiency may indicate a lack of dopamine and can present as sleep issues, impulsivity and body aches or pains.²

Stress can also present as physical symptoms such as tense muscles, headaches, chest tightness or lightheadedness.¹ Bodily movement reduces tension, encouraging relaxation and mental clarity.

Dance is a unique form of physical activity that incorporates choreographed sequences, synchronicity and memorized movements. A systematic review of literature designed to study the cognitive impact of dance, found that dance was as effective, if not more effective, than other physical activities at improving psychological outcomes.³ The studies looked at dance broadly, including traditional dance forms, aerobic dance or theatrical dance across all ages. Preliminary evidence further suggested dance may be superior at improving motivation, distress, depression, memory and emotional well-being.³

Formal dance classes are often conducted in social settings, where engagement and a supportive community enhance participant enjoyment.³ Performing in group settings has been linked to the release of endorphins, inducing relaxation and pleasure. Incorporating exercise with music, which has been shown to have therapeutic effects, can also amplify mental health benefits. Dance requires multitasking between musicality, artistry, memory and focus, acting as a distraction from mental burdens.³ While further studies are needed to determine the specific benefits of dance based on genre, frequency and age, its overall health benefits should be recognized.

Fifty percent of people who start an exercise program will cease within six months; therefore, it is important to find an activity that is enjoyable to reap the long-term benefits.³ Whether it’s ballroom or ballet, the samba or swing, dance can have a positive impact on mental health.

If you’re seeking a new physical activity to incorporate into your routine, consult your healthcare provider and investigate concerns such as safety, efficacy and cost before making any changes to your treatment regimen. Exercise should be used in moderation and under the guidance of a professional with extensive fitness, nutritional and healthcare experience.

Sources

1. Exercising to relax - Harvard Health Publishing. Harvard Health. July 7, 2020. https://www.health.harvard.edu/staying-healthy/exercising- to-relax.

2. Professional CC Medical. Endorphins: What they are and how to boost them. Cleveland Clinic. May 1, 2024. https://my.clevelandclinic. org/health/body/23040-endorphins

3. Fong Yan A, Nicholson LL, Ward RE, et al. The Effectiveness of Dance Interventions on Psychological and Cognitive Health Outcomes Compared with Other Forms of Physical Activity: A Systematic Review with Meta-analysis. Sports Med. 2024;54(5):1179-1205. doi:10.1007/s40279-023-01990-2

Advocacy Action Alert: Support Funding for the CDEA

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: The United States Congress is currently working on the annual spending bills for FY 2026. Congressman Ted Lieu (D-CA) is leading a sign-on letter, asking for funding for the Chronic Disease Education and Awareness (CDEA) Program at the Centers for Disease Control and Prevention (CDC).

Why It’s Important: The CDEA aims to improve public health outcomes and address health disparities related to chronic diseases through increased awareness, education and outreach. This support allows for public health activities dedicated to sleep or sleep disorders to continue. Though there is strong scientific evidence of sleep’s critical role in overall health, the CDC only has a few narrow sleep programs. It is important for the CDC to strengthen this foundation and modernize sleep public health, education and awareness activities.

Request: Please provide at least $6 million for the Chronic Diseases Education and Awareness Program at the CDC. Your representative must sign-on by Thursday, May 15th.

Action: Email your House representatives asking them to sign-on to this letter!

1. Find your representative's contact information here

2. Download and save the sign-on letter and it's corresponding Dear Colleagues letter

3. Email the staffer, using the sample message below. Please copy and paste the message below into an email, as the representatives will need the link to sign-on. Attach both sign-on letters that you downloaded to the email.

**Sample Message**

Dear [Staffer Name],

My name is [Your Name] and I am a constituent and an advocate for the Restless Legs Syndrome community. I write today to ask that your office please join FY26 Appropriations Sign-On Letter for the Chronic Disease Education and Awareness (CDEA) Program at the Centers for Disease Control and Prevention, led by Congressman Ted Lieu (D-CA). I have attached a copy of the letter and its corresponding Dear Colleague to this message and ask that you sign on to this critical letter. To sign on, please use this link.

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

Thank you for your time and your consideration of this request. I look forward to hearing from you in this regard.

Sincerely,

[Name]

[Address]

****

*Please Note: Only Congressional representatives can access the link in the sample message. If you copy and paste the message into an email, the link should be included. The link is also embedded in the sign-on letters.

It is important to reach out as soon as possible, to ensure that your congressional offices have time to review and approve the letter. Last year, because of our advocacy efforts the sign-on letter attracted bipartisan supporters and we are hoping to attract even more support this year to demonstrate our growing influence on Capitol Hill and impact on medical research and public health.

Thank you for your support as an advocate! If you have questions, please email adrianna@rls.org.

RLS and Exercise: Your Questions Answered

Ongoing research on RLS and exercise suggests that daytime movement can help alleviate nighttime symptoms. Mild to moderate exercise typically benefits RLS however, vigorous exercise often triggers RLS symptoms. Vigorous exercise will vary depending upon a person’s level of fitness. No matter how you choose to exercise, make sure it is both enjoyable and safe for you by first consulting a healthcare provider.

Katie Cederberg, PhD received her doctorate in rehabilitation science from the University of Alabama at Birmingham and is currently a postdoctoral scholar at Stanford University, where she conducts research on the efficacy and effectiveness of exercise for managing symptoms of RLS and co-occurring conditions. She recently answered questions related to RLS and exercise in an RLS Foundation webinar available on www.rls.org.

Q: Is exercising the brain more important than exercising muscles before bedtime to stop RLS symptoms?

A: Exercising the brain has been anecdotally helpful in relieving some symptoms, primarily described as a distraction for your brain. Physical exercise is shown to have benefits for RLS, as well as maintaining general health and wellness. There is no study that compares the effectiveness of physical versus mental exercises, but both can be utilized to manage symptoms.*

*Medical Editor's Note: Mental activities such as doing a crosswordpuzzle, playing solitaire, playing a video game or chess will typically relieve RLS symptoms. However, watching a very interesting and engaging movie tends to worsen RLS.

Q: The more I keep moving in the day the less I notice the symptoms. Is this masking symptoms instead of curing them?

A: Research has yet to determine whether there is a physiological change in the body when exercising that leads to a relief in RLS symptoms. Any movement, especially walking relieves RLS.*

*Medical Editor’s Note: A short amount of walking may only relieve RLS temporarily (it will quickly return when back at rest) but more prolonged walking may relieve the RLS for hours.

Q: Can stretching or doing specific exercises stop an ongoing episode of RLS symptoms?

A: For some people, exercise can relieve the symptoms of an ongoing episode of RLS. Based on the questionnaire, some people experienced relief through movement while symptomatic, halting RLS symptoms and allowing them to fall asleep. Others experienced only temporary relief, and symptoms returned when they stopped their movements. The duration of exercise or movement may determine whether temporary or prolonged relief will occur.

Q: Does taking an opioid to reduce symptoms of RLS pose any issues with exercise?

A: Consult your physician to determine if there are any contraindications to engaging in exercise based on your personal medical history and health.*

*Medical Editor’s Note: There should be no issue with exercising while taking opioids unless the opioids are causing side effects of sedation which may impair coordination.

Q. The idea of “exercise snacks” is becoming popular. Is there any suggestion that this will benefit people with RLS?

A: Exercise snacks” refers to breaking up your daily exercise goal into smaller portions throughout the day. For example, instead of one 30-minute session, exercise is completed in three 10-minute sessions. While there are no studies that pertain specifically to RLS, this may be beneficial based on studies for cardiovascular health.

Q: When exercising, does it matter what modality is used? Walking versus a treadmill, or exercise bike versus a street bike?

A. There are physiological differences in how you exercise. How your body moves and what muscles are utilized will be different on a treadmill versus walking on the street. Every patient tends to have a preferred mode of exercise so trial and error can determine which is best. There is no current research studying how modality interacts with RLS symptom effect.

Q: What are some options for individuals who are mobility impaired and have RLS?

A. There are adaptive exercise options for those who are mobility impaired. Consider consulting an exercise professional to find exercises that best fit abilities and needs. NCHPAD (the National Center for Health, Physical Activity and Disability) has exercise resources, including a YouTube channel for those with mobility impairments.

Q: Does aerobic swimming help RLS under some circumstances, or worsen RLS?

A. It depends on one’s circumstances and previous experience with exercise and workout routines. Starting an activity at a higher intensity than normal or introducing new workouts that your body is not used to may aggravate symptoms. When starting a new activity, it is a good idea to start small with lesser intensity and work slowly up the intensity scale.

Q: Are some exercises better than others to reduce the severity of RLS or to keep it from getting worse?

A. It will depend on the type of exercise your body is familiar with. If you are looking to try a new activity, monitor your intensity level and start small.

Q: Will exercise help mitigate the progression of RLS, from mild symptoms as a child to increasing severity throughout the decades?

A. Exercise can become more difficult with age, and studies have shown that exercise can help mitigate some aging factors. There is no research that studies the role this can play in RLS.

Q: Is it possible there are different types of RLS with similar symptoms but different outcomes for exercise?

A. Exercise heterogeneity/response heterogeneity refers to the different outcomes experienced by each individual based on similar practices. Further research needs to address this question: Will exercise be as beneficial to an individual with severe RLS compared to an individual with moderate RLS?

Q. Are there exercises that can help with RLS felt specifically in the legs, arms or other parts of the body?

A. There is no research that studies this specifically for RLS, but physiological research shows there are different benefits compared to completing an entire body workout versus focusing on one part of the body. There are additional cardiovascular benefits when the entire body engages in exercise. Make sure that your physician and exercise specialist are aware that intense activity can exacerbate symptoms so they can tailor the program to you.?

Welcoming New Local Support Group Leaders

The RLS Foundation volunteer network consists of compassionate and motivated individuals who want to make a positive impact in their community. We are excited to introduce three new local support group leaders, who will serve Massachusetts, Georgia and the Bay Area in California. Local support group leaders hold meetings (in-person, virtually or hybrid) to foster meaningful connections and provide support within their community. Search by state to find out if there is a local support group in your area. Interested in becoming an RLS Foundation support group leader? Click here to learn more about the role and the application process.

North Shore, MA Support Group

Kelly Ebert is forming a new support group for the North Shore Massachusetts area. “I want to help others with this horrible affliction, if in no other way but to offer the idea that none of us are alone.” She plans to create a hybrid experience with a balance of in-person and virtual meetings. “I believe in-person experiences are necessary to our human existence and an in-person group does not exist in my area.”

Kelly is an Associate Professor and Program Director at the Massachusetts College of Pharmacy and Health Sciences with long term participation in support groups. She has volunteered extensively in national and state radiation therapy organizations. She lives in Amesbury, MA and her hobbies include hand-building pottery and furniture refinishing.

Next Meeting: April 8, 2025 by Zoom

Click here for meeting details and to register.

Sandra Norman is a passionate and dedicated community leader, who is beginning a Georgia support group. “I have had RLS for over 40 years, but it's only recently that I've discovered the RLS Foundation. I'm excited to start a support group to spread awareness, so physicians can pass information about this resource along to their patients.”

When Sandra finds something she is passionate about, she says, “I go at it like gangbusters!” After retiring, Sharon waited for the right volunteer opportunity and she is thrilled to say she has finally found it. Outside of her volunteer activities, she is a fitness instructor and loves taking care of her grandchildren.

Next Meeting: April 15, 2025 by Zoom

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CJ Liang is eager to start a support group for the Bay Area, explaining that “I have received so much help from RLS Foundation resources, including the website and webinars. I have learned so much about how to cope with RLS and I hope to help others by leading a group."

CJ is a frequent participant in the Foundation's monthly virtual support group meetings. She recalls hearing from an emotional young woman during one of these meetings, who had joined on behalf of her mother whose RLS sypmtoms were severe. Reflecting, CJ expresses that she is fortunate to have found the help she needed, having witnessed first hand the importance of shared experiences and emotions.

Outside of community involvement, CJ enjoys being part of a group that meets weekly to sing and play instruments together - she plays the ukulele!

Next Meeting: June 8, 2025 by Zoom

Click here for meeting details and to register

Connie Jeschke previously served as an RLS Foundation support group leader in Nashville, TN RLS in 2015. During that time, Dr. Arthur Walters invited her to volunteer, and she eagerly accepted the opportunity since "RLS is a devastating condition for anyone to endure." She drove three hours each way, to lead her meetings. "Despite the challenges, I cherished the chance to learn more about RLS and enjoyed helping others,” she says today. She has since moved to Illinois and is eager to start a new virtual group in her area. Eliminating the burden of driving to meetings enables Connie to help others from the comfort of home!

Next Meeting: May 21, 2025 by Zoom

Click here for meeting details and to register

If a local support group does not exist in your area, please join one of the Foundation's monthly virtual support group meetings! Click here to view dates and to register.

Sharing Poems from Our Community

In honor of World Poetry Day on March 21, we share poems submitted by RLS community members that raise awareness about the impact of RLS. These heartfelt works provide insight, strength, and hope for all who live with RLS.

Stories like this can be found in our quarterly magazine, NightWalkers. If you would like to receive a subscription to our magazine, join the RLS Foundation as a member today! Click here to learn more.

Recognizing Women in Leadership at the RLS Foundation

March 8 marks International Women’s Day! This global celebration recognizes the incredible contributions of women around the world, honoring pioneers of change. The RLS Foundation is proud to be guided by a team of remarkable women who are committed to supporting the RLS community. We'd like to take a moment to recognize just some of the women who contribute to the Foundation’s work, including staff, virtual support group leaders, Board members and Scientific and Medical Advisory Board (SMAB) members. Thank you for your time, commitment and unwavering support in helping the Foundation achieve its mission!

Looking for RLS Foundation Volunteers

The RLS Foundation is excited to announce that our 2025 volunteer application is officially open. We are looking for compassionate and collaborative individuals interested in starting a new local RLS support group.

RLS Foundation volunteers are dedicated to supporting others within their community by coordinating meetings in person or virtually and facilitating discussions to share knowledge and experience in living with RLS. By volunteering, you can make a lasting difference to others affected by RLS and remind those in your community that they are not alone.

Local RLS Support Group Leaders serve as catalysts for building a community of mutual support and trust for individuals within their local area. If you are interested in connecting with others in your area who are looking to improve their understanding and management of RLS and you want to make a meaningful difference, starting a local RLS support group in your community may be the perfect fit.

As a local RLS support group leader, your primary responsibilities are to:

• Provide a direct avenue of support and local point-of-contact for individuals seeking to better manage their RLS.
• Foster new connections in your area to grow your group over time.
• Hold at least one meeting annually – either in person or virtually.
• Collaborate with Foundation staff to share our resources and educational materials through publications and webinars.

How to Apply:

To apply to become a Local RLS Support Group Leader, please complete the online volunteer application form. For questions about becoming an RLS Foundation volunteer, contact Zibby Crawford at 512.366.9109 or email zibby@rls.org.

Deadline EXTENDED: Call for RLS Research Grant Proposals

The RLS Foundation, a 501(c)(3) nonprofit corporation and aspires to achieve universal awareness of the disease, to support the identification of effective treatments, and to find a cure for the millions of men, women, and children who suffer from RLS.

The RLS Foundation calls for grant proposals of a one year-duration, with funding levels of up to $50,000 (including 8% for F&A costs), based on the number of funded applications. A renewal or extension of a previously funded proposed project may be considered, but any extension would be subject to the regular competitive approval process for year two.

The number of total awards will depend on the number and quality of the applications submitted. Currently, the Foundation is expecting to support up to 2-3 proposals, with two grants funded in collaboration with the American Academy of Sleep Medicine Foundation, for the 2025 – 2026 grant cycle.

Spring 2025 Priorities

For this round of funding, the primary research priorities are:

• Augmentation: Identifying who is at risk for developing augmentation (e.g. through genetic markers, iron status, or other at-risk clinical phenotypes) and who is lower risk, to understand if there is a subset of RLS patients who can be more safely treated with dopamine agonists long-term.
• Therapeutics: Elucidate the mechanisms involved in the therapeutic and unwanted side effects, (e.g., augmentation) of RLS drugs, novel therapeutics (i.e. medical cannabis) and advance knowledge toward development of more durable treatments.
• Disease risk and expression: Elucidate genetic, epigenetic, biologic factors associations with disease risk or with different RLS phenotypes.
• Other topics: Other research areas related to RLS may also be accepted for funding consideration.

Requirements

• Eligibility: All institutions within the United States, Canada, and other countries where supervision of grant administration is possible are eligible.
• Human Subject Protection: Approval by the institution’s human investigation committee is necessary for all projects that involve human subjects.
• Recombinant DNA Research and Animal Welfare: The RLS Foundation has adopted the regulations pertaining to these areas, as established by the US Public Health Service.
• Multiple Awards: Individual investigators may receive a maximum of one RLSF grant award of any kind in a given year.

Application process

• Submission is a two-step process requiring both preapplication (letter of intent) due no later than 5 pm CST January 25, 2025 and full application as indicated below. Both preapplication and, if invited, full application, will be submitted via a specific link.
• The application title and all information for the Principal Investigator (PI), Business Official(s), Performing Organization, and Contracting Organization must be consistent throughout the entire preapplication and full application submission process.
• If a joint submission by multiple PIs (Partnering PI Option): The Initiating PI must complete the preapplication submission process and submit the contact information for the partnering PI. The Partnering PI(s) will then be notified of the preapplication submission separately by email.
• Fund disbursement for successful applications will be contingent upon documentation of approved institutional review or animal user protocols, as appropriate.

Preapplication (Letter of Intent) Submission Components

The Letter of Intent (LOI) should consist of preproposal narrative with:

• Rationale: State the hypothesis and reasoning on which the proposed research project is based. Briefly describe how preliminary data, scientific rationale, and referenced literature support the research hypothesis. Clearly demonstrate that there is sufficient rationale for the project. (Limit: 500 words)
• Focus Area: State the Research Priority that the proposed study seeks to address. Select one or more from the current research priority list.
• Specific Aims and Study Design: Clearly describe the type of research study being proposed. Concisely state the project’s objectives, specific aims, and ultimate endpoints. As applicable, briefly describe the proposed recruitment strategies and methods, how they will accomplish the project’s aims, as well as the outcome measures that will be used. (Limit: 500 words)
• Research Team: Provide a description of the research team that clearly demonstrates the appropriate background and experience to accomplish the proposed work. (Limit: 250 words)
• Impact and Relevance to RLS: Describe how the proposed work will impact healthcare and quality-of-life needs for patients and/or family members or beneficiaries living with RLS. (Limit: 250 words)

In addition, applicants should provide a reference list (one-page limit), list of abbreviations, acronyms, and symbols, and key personnel biographical sketches (NIH format). All attachments need to be uploaded in PDF format.

Letter of intent (see attached sample application) to be submitted online here by no later than 5:00 pm CST January 25, 2025.

Applicants will be informed in late February if their proposal is invited for a full application.

Full Application Submission Components

If selected, the full online application consists of a cover page that must be signed by the university or organizational representative(s) and the principal investigator, an abstract with a clearly stated hypothesis, and the proposal that includes:

Project Narrative (no more than 5 pages), with background, hypothesis / objective, specific aim(s) and research strategy. Within the research strategy section, describe the study design, methods, models, and analyses in sufficient detail for assessment of the application. Explain how the research strategy will meet the project’s goals and milestones within the proposed period of performance. Address potential pitfalls and problem areas and present alternative methods and approaches. For studies performing prospective human subject recruitment or observation: Describe the population(s) of interest. Describe how data will be reported.

Budget and budget justification

Biographic sketches of each investigator (NIH format)

Disclosure of previous RLS Foundation support and other sources of funding.

Full Applications will need to be submitted online, with the link provided in LOI acceptance notification, and the deadline for the full proposal submission is April 11, 2025. All attachments need to be uploaded in PDF format.

Award Process

Schedule: The RLS Foundation Scientific and Medical Advisory Board (SMAB) and external reviewers strive to review all applications in a timely manner. The goal is to provide the results to the LOI applicants within two months of the respective grant deadline and four months after submission of the full proposals.

Review: The SMAB will evaluate and rank the full proposals based on scientific merit. Overall impact, significance, approach, innovation (conceptual, technical) and individual criteria will be taken into account for funding consideration.

Award: The RLS Foundation Board of Directors will make final award decisions in accordance with available funds, based on the evaluation provided by the SMAB and other prioritization factors as determined by the Board of Directors.

Recipient Requirements: In order to receive an RLS Foundation research grant, the recipient must:

1. Within one month of the grant award, provide a photo of the grantee and a one-page article for publication in NightWalkers (the Foundation’s quarterly news magazine), describing in layman’s language the importance of the research to the RLS community and the recipient’s intention for future research.
2. Use the terminology restless legs syndrome in all grant-related publications and correspondence.
3. For 1-year awards, agree to submit a progress report after 6 months and 12 months from the starting date of the grant.
4. Acknowledge the RLS Foundation’s support in any published work or audiovisual productions resulting from research that the Foundation has supported. (Provide PDF copies of any reprints to the Executive Director of the RLS Foundation.)
5. Agree, if RLS Foundation funded research is commercialized or generates revenues, to devote a portion of the revenues to repaying the entire amount of the grant received, plus interest at the-prevailing prime rate, to the Foundation. Interest will be calculated semi-annually on the unpaid portion of the amount to be repaid.

Lastly, the intent of the RLS Foundation Research Grant Program is to provide seed monies to support researchers in their research endeavors and help them obtain the data to successfully request large scale funding elsewhere.

Thus, while an application may be also submitted to other organizations or agencies for funding, the applicant may not receive funding from the RLS Foundation, if any of those other projects are awarded or funded prior to the award being granted by the RLS Foundation.

The applicant will notify the RLS Foundation in writing of award funding for the same proposal from another organization and withdraw the application from consideration.

Costs Not Permitted

The following costs are not allowable under the RLS Foundation’s grant programs:

• New construction, alterations, or renovations of existing facilities
• Consultant fees, unless specified in the original grant application
• Travel and healthcare costs

RLS Research Grant Program

The RLS Grant Program started in 1997 and has funded over 50 grants totaling over $2 million. Membership support is the primary funding support of the RLS Foundation Research Grant Program. Help us to continue to fund promising new RLS research and end RLS for future generations.

RLS Foundation Certifies University of Virginia as a Quality Care Center

As an RLS Quality Care Center, the University of Virginia is certified to provide expert care to patients with restless legs syndrome, a chronic neurological sleep disorder.

AUSTIN, TEXAS, January 8, 2025 — The Restless Legs Syndrome (RLS) Foundation announces it has certified the University of Virginia at Charlottesville (UVA) as an RLS Quality Care Center.

An estimated 2% to 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, UVA will serve as a destination for RLS patients who need expert medical care.

“We are extremely honored to receive this prestigious designation,” says Elias Karroum, MD, PhD, director of the Quality Care Center at UVA. “Our goal is to provide exceptional care for RLS patients to make a lasting impact on the health and wellbeing of the patients that we serve. This status ensures adherence to the highest standards of care to manage all levels of RLS severity.”

UVA joins a network of 12 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 regional support groups and for healthcare providers who treat patients with RLS
• 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 pleased to welcome UVA to the RLS Foundation Quality Care Center network,” says RLS Foundation Executive Director Karla Dzienkowski. “People with moderate to severe RLS face significant challenges in symptom management. Access to highly skilled and experienced healthcare providers is essential to effective treatment and improvement in quality of life.”

Dzienkowski adds, “The goal of the Quality Care Center network is to provide RLS patients access to healthcare providers with expertise in RLS management. We look forward to partnership with UVA to advance the quality of care for RLS patients.”

Other certified RLS Quality Care Centers include:

• 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

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, or RLS. Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments, and, through research, 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:

Karla Dzienkowski, RN, BSN, Executive Director

512-366-9109

karla@rls.org