Restless Legs Syndrome Foundation Blog

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.