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.

Advocacy Action Alert: Support Sleep Disorders in the Peer-Reviewed Medical Research Program

Dear RLS Community,

The United States Senate is currently crafting the FY 2025 Department of Defense (DoD) appropriations bill, which will determine which medical conditions are eligible for research funding through the Peer-Reviewed Medical Research Program (PRMRP). Today, we need your help to ensure “sleep disorders” are included in the PRMRP for FY 2025! Take action now by contacting your state’s Senators to ask for their support.

Why It’s Important: The DoD PRMRP is a program designed to support research that enhances the health and well-being of military service members, veterans, retirees, and their family members. Restless Legs Syndrome (RLS) is a major sleep disorder that affects an estimated 40,000 active-duty military personnel. Including “sleep disorders” in the PRMRP allows researchers to compete for $370 million in federal research funding each year.

Action: Please contact your Senator and ask that they support the inclusion of “sleep disorders and restrictions” in the DoD PRMRP’s eligible conditions list in FY 2025. The last day to contact your representative is Monday, April 29.

How to Participate:

1. Email Matt Duquette (duquette@hmcw.org) at the Health and Medicine Counsel to indicate that you are interested in taking action with the subject line: PRMRP RLS Advocacy Action Alert. Provide your mailing address and zip code to help Matt identify your Senator and connect you with the correct staffer.

Please copy Adrianna Colucci (adrianna@rls.org) at the RLS Foundation so we know which offices have been contacted.

2. Once you receive a response from Matt, email your Senator. You can copy and paste the sample message below:

Sample Message:

Subject line: FY 2025 DOD PRMPRP

Dear [Staffer Name],

My name is [your name] and I am a constituent of [insert representative’s name] and an advocate for the Restless Legs Syndrome community. I write today to ask that your office please support the community’s FY 2025 request to ensure that sleep disorders and restrictions are once again included in the DoD PRMRP’s eligible conditions list for FY 2025.

[Please briefly share your personal 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]

3. Personalize your message by briefly sharing your RLS story in 2-3 sentences. 4. Send!

Just a few minutes of your time could help influence the future of sleep-related research funding. If you have any additional questions, please reach out to info@rls.org. RSVP to our Facebook event page to stay up-to-date. Thank you for your support as an RLS and sleep advocate!

The American Academy of Sleep Medicine Invites Public Comment

The American Academy of Sleep Medicine (AASM) is inviting public comment through April 9th on the newly drafted clinical practice guidelines and systematic review of the Treatment of Restless Legs Syndrome and Periodic Limb Movement Disorder. These new guidelines will synthesize the RLS treatment therapies that are now recommended for adult and pediatric populations, updating the previous 2012 AASM RLS guidelines. In these guidelines, treatments were scored as either “strong” or “conditional” (strongly for, strongly against, etc.) The systematic review provides further insight and research data to support the accompanying guidelines. A video overview highlighting the signifcant changes is also available.

Interested members of the public are encouraged to provide feedback on the drafted guidelines to the AASM. From healthcare professionals to advocacy groups to RLS patients and caregivers – all can provide important comments. Varying evidence has value, including both clinical experience and published articles. Public participation ensures that the guidelines meet the needs of the medical and RLS patient communities. Responses should include questions and perspectives that are appropriate, respectful and relevant to the subject.

Comments can be made Tuesday, March 12th through Tuesday, April 9th. To submit comments, complete the disclosure form and email it alongside your comments and questions to ukazmi@aasm.org.

Revisions to the draft guideline and systematic review are at the discretion of the task force, but all submitted comments will be considered and responses internally documented before the guidelines are submitted to the AASM Board of Directors for approval for publication in the Journal of Clinical Sleep Medicine.

Disclaimer: The recommendations in the clinical practice guideline manuscript are in draft form and are still subject to substantive changes by the time they are published in final form. They should not be copied, disseminated, or implemented until final publication.

Helpful Abbreviations

• AASM: American Academy of Sleep Medicine
• CPG: Clinical practice guidelines
• CST: Clinical significance threshold
• IRLSSG: International Restless Legs Syndrome Study Group
• PICO: Patient, Intervention, Comparison, and Outcomes questions
• PLMD: Periodic limb movement disorder
• QOL: Quality of life
• GRADE: Grading of Recommendations Assessment, Development and Evaluation methodology
• RCT: Randomized controlled trial
• SR: Systematic review
• TF: Task force
• WASO: Wake after sleep onset

Translation from Generic Brand Name to Common Brand Names

• Bupropion: Wellbutrin
• Cabergoline: Dostinex
• Carbamazepine: Tegretol
• Clonazepam: Klonopin
• Dipyridamole: Persantin
• Ferric carboxymaltose: Injectafer
• Ferrous sulfate: various iron brand names
• Gabapentin enacarbil: Horizant
• Gabapentin: Neurontin; Gralise
• Levodopa: Sinemet
• Low-molecular-weight iron dextran: INFeD
• Oxycodone: Oxycontin
• Pramipexole: Mirapex
• Pregabalin: Lyrica
• Transdermal rotigotine: Neupro patch
• Valproic acid: Depakote

RLS Community: Provide Your Comments to CDC by April 10

Background

The Centers for Disease Control and Prevention’s (CDC) National Center for Injury Prevention and Control is in the process of updating the 2016 CDC Guideline for Prescribing Opioids for Chronic Pain. The draft updated Clinical Practice Guideline for Prescribing Opioids is available for public comment in the Federal Register until April 10, 2022. The RLS Foundation urges all RLS community members to add their voice to request that the CDC include chronic diseases like RLS in the treatment guidelines. Below are the 5 steps you can take to let the CDC know that low-total-daily dose opioids must be included as a viable treatment option for RLS patients.

Instructions

1. Start on webpage: https://www.regulations.gov/document/CDC-2022-0024-0001/comment and click on "Comment"

2. Enter your comment using the sample comment below as a template.

3. Identify yourself as an individual, 4. Check the box for reCAPTCHA, and 5. Submit Comment.

Thank you for joining our RLS advocacy efforts by raising your voice for RLS, sleep and sleep disorders!

-----*SAMPLE COMMENT*-----

I thank you for revising the CDC Clinical Practice Opioid Prescribing Guideline, but the draft does not address chronic conditions like RLS that are different from chronic pain. Restless legs syndrome (RLS) is a chronic neurological disease that causes an urgent need to move the legs and, in some cases, other parts of the body as well. The symptoms make it impossible to sleep or even to sit quietly, which seriously affects every aspect of daily life.

In the U.S., nearly 12 million adults and children suffer from RLS. There is no cure. A few prescription medications may relieve the symptoms for a while, but over time those same medications can make the symptoms worse. When all other medical therapies fail, ample scientific research supports the use of low-total-daily-dose opioids to treat severe RLS.

[Tell your own experience with RLS in a short paragraph.]

The first physician to diagnose RLS more than 300 years ago treated it successfully with opioid therapy. Ironically, the 2016 CDC Opioid Prescribing Guidelines often made physicians afraid to prescribe opioids for any reason, even for patients with severe, unrelenting RLS who had been on the same low-total-daily-dose opioid therapy for decades. I urge the CDC to include a section in the 2022 Opioid Prescribing guidelines to address chronic medical conditions like RLS that require opioid therapy as a last resort, in low-total-daily doses, carefully monitored.

Thank you for your consideration of these vital issues, and please consider the RLS Foundation at www.rls.org as a resource for scientifically-based information about RLS, as it is for members like me.

Act NOW!

Add your comments by April 10 to be sure that the committee receives as many comments as possible from the RLS community. Please contact the RLS Foundation for assistance at info@rls.org.

"Congressional Sign On Letter" for Sleep Disorder Research, Education and Awareness

Background

For the third year in a row, an official Congressional Sign On Letter will be sent to the Appropriations Committee asking them to prioritize support for sleep and sleep disorders research and awareness. To be effective, we need your member of the U.S. House of Representatives to "sign on."

Urgent Deadline Approaching

Your Congress Person will only join if YOU (the constituent) ask, and the final deadline is April 8. Take action TODAY, it is imperative! Here’s how:

1. Provide us with your name, address and email here. Include your Representative's name - go to www.house.gov and enter your zip code in "Lookup" to confirm your current member of House of Representatives.
2. Within 24 hours we will return text that you can copy and paste into an email (sample below) along with the email address for the staffer that handles healthcare for your district.
3. Insert staffer's email, cc: clara@rls.org and Press SEND!

Thank you for joining our RLS advocacy efforts by raising your voice for RLS, sleep and sleep disorders!

-----*SAMPLE PERSONALIZED REQUEST EMAIL*-----

To: [first.last]@mail.house.gov
Cc: clara@rls.org
Subject: Sign On Letter – Sleep Community

Dear [Staffer],

My name is [Your Name] and I am a constituent from [City, State]. I am also an advocate for the RLS and sleep disorders patient community. I hope your office will join the attached sign on letter, which supports the community’s appropriations recommendations for FY 2022. To join this letter, please contact Heather Connelly at heather.connelly@mail.house.gov by April 8.

Thank you for your time and for considering this request.

Sincerely,
[Your Name]
[Your Address]
[City, State Zip]

ATTACHMENT: FY22 Sleep Disorders DC and Sign on Letter

Act NOW! Send us your request by April 5!

Please submit your information now, you will receive a personalized email to send to the appropriate health staffer within 24 hours. All requests must arrive before April 5 to meet the email deadline of April 8.

"Congressional Sign On Letter" for Research and Awareness for Sleep Disorders

Background

Congressman Adam Schiff, a champion for the sleep community, is leading an official Congressional Sign On Letter asking the Appropriations Committee to prioritize support and resources for additional sleep and sleep disorders research and public health awareness. To be effective, we need your member of the U.S. House of Representatives to “sign on” to this letter.

Urgent Deadline Approaching

Your Congress Person will only join if YOU (the constituent) ask, and the final deadline is March 6. Take action TODAY, it is imperative! Here’s how:

1. Provide us with your name, address and email here. Include your Representative's name - go to www.house.gov and enter your zip code in "Lookup" to confirm your current member of House of Representatives.
2. Within 24 hours we will return text that you can copy and paste into an email (sample below) along with the email address for the staffer that handles healthcare for your district.
3. Insert staffer's email, cc: amber@rls.org and Press SEND!

Thank you for joining our RLS advocacy efforts by raising your voice for RLS, sleep and sleep disorders!

-----*SAMPLE PERSONALIZED REQUEST EMAIL*-----

To: [first.last]@mail.house.gov
Cc: amber@rls.org
Subject: Sign On Letter – Sleep Community

Dear [Staffer],

My name is [Your Name] and I am a constituent from [City, State]. I am also an advocate for the RLS and sleep disorders patient community. I hope your office will join the attached sign on letter, which supports the community’s appropriations recommendations for FY 2021. To join this letter, please contact Anthony Theissen in the office of Congressman Schiff at Anthony.Theissen@mail.house.gov or x5-4176.

Thank you for your time and for considering this request.

Sincerely,
[Your Name]
[Your Address]
[City, State Zip]

ATTACHMENT: FY21 Sleep Disorders DC & Sign on Letter

Act NOW! Send us your request by March 5!

Please submit your information now, you will receive a personalized email to send to the appropriate health staffer within 24 hours. All emails must be sent before March 6, 2020.

Contact the Department of Health and Human Services and ask them to maintain access to low total daily doses of opioid therapies for RLS patients

As the nation moves to address the nationwide opioid crisis, many people with severe RLS are finding it difficult to access opioid medications to treat their symptoms. Your help is needed by March 25 to ensure this vital treatment option continues to be available to RLS patients.

Decision-makers at the US Department of Health and Human Services (HHS) are requesting comments from patients who use opioid therapies to manage their chronic conditions. Agency officials want to hear from RLS patients on how they manage their condition, and barriers that are affecting their access to treatment.

Background

On Dec. 18, 2018, the Pain Management Best Practices Inter-Agency Task Force issued a draft report on “Pain Management Best Practices: Updates, Gaps, Inconsistencies, and Recommendations.” This Task Force was established to provide guidance on policy for the use of opioid therapies to treat pain and other chronic conditions. HHS is overseeing this effort with the Department of Veterans Affairs and the Department of Defense.

RLS Foundation leaders met with the chair of the Task Force, Dr. Vanila Singh, earlier in 2018. Dr. Singh is the chief medical officer at the HHS Office of the Assistant Secretary for Health and has been overseeing a major portion of the federal government’s response to the opioid abuse crisis. She confirmed that RLS patients will need to comment on the Task Force’s draft report, so that the use of low total daily doses of opioids to treat severe RLS is incorporated when the recommendations are finalized later this year.

RLS is not a chronic pain condition; its underlying mechanisms and neuropathology are very different. It is vital for the RLS community to take part in this effort, however, because the perspectives shared will inform the Task Force’s guidance on regulations that will affect RLS patients who take low total daily doses of opioid medications to manage their condition.

HHS is requesting written feedback from the public on the draft report. The public will have 90 days to comment. Once the comment period ends, the Task Force will consider comments received and compile a Final Report with its proposed updates and recommendations.

Please submit your comments before March 25, 2019. RLS patients and caregivers must make their voices heard at this critical stage in the policy making process!

Take action: Submit your comments

Step #1: Go to the HHS online portal for submitting electronic comments and click on “Comment Now” at the right of the page.

Step #2: Tell the Task Force about RLS, how you manage your symptoms, and what kind of barriers have affected your access to treatment.

You can use the suggested discussion topics below to inform your comments. Feel free to answer the questions directly or simply review them to help guide your response:

• How long have you had RLS, and what were the steps you took to get diagnosed?
• How would you describe your RLS symptoms? (Characteristics could include location, intensity, duration, constancy or intermittency, triggers etc.)
• Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your RLS? (Examples of activities may include work or school activities, sleeping through the night, daily hygiene, participation in sports or social activities, intimacy with a spouse or partner, etc.)
• How has your RLS changed over time? (Considerations include augmentation and the severity and frequency of symptoms.)
• What are you currently doing to help treat your RLS? (Examples may include prescription medicines, over-the-counter products, and non-drug therapies.)
• How has your treatment regimen changed over time, and why? (Examples may include change in your condition, change in dose, or treatment side effects.)
• How well does your current treatment regimen manage your RLS?
• What challenges or barriers to accessing or using medical treatments, including low total daily doses of opioids, have you or do you encounter or are you concerned about?

If you have any questions about submitting comments, please contact Peter Herzog at herzog@hmcw.org or (202) 544-7499.

Electronic comments must be submitted on or before March 25, 2019.

U.S. Department of Health and Human Services, Office of the Assistant Secretary for Health
200 Independence Avenue SW, Room 736E
Attn: Alicia Richmond Scott, Pain Management Task Force Designated Federal Officer
Washington, DC 20201

Step #3:If you wish to let us know that you completed Step #1 and #2 click here, your information will remain confidential. Thank you for participating in this important Action Alert!

Please note that providing your name is optional, and comments may be publicly viewed on regulations.gov. Any personally identifiable information you include in the comment form or an attachment will be provided to the department or agency, and may be publicly disclosed in a docket or on the Internet.

Other Ways to Submit Your Comments

Email written comments to: paintaskforce@hhs.gov

Mail written comments to:

U.S. Department of Health and Human Services, Office of the Assistant Secretary for Health
200 Independence Avenue SW, Room 736E
Attn: Alicia Richmond Scott, Pain Management Task Force Designated Federal Officer
Washington, DC 20201

More information

• Learn more about RLS advocacy and how to take action.
• Learn how to participate in the National Opioid RLS Registry.
• Make a financial gift in support of the RLS Foundation Advocacy Initiative.