Restless Legs Syndrome Foundation Blog

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

Click here for meeting details and to register

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!