Restless Legs Syndrome Foundation Blog

April 1, 2026

Advocacy Action Alert: Include "Sleep Disorders and Restriction" in the Department of Defense Peer-Reviewed Medical Research Program

Advocacy is an important part of the RLS Foundation's work to increase awareness and promote RLS research. We ask RLS community members to participate in Advocacy Action Alerts to expand our reach within Congress. If you have any questions, please email adrianna@rls.org.

Background: Each year, the United States Senate crafts an annual Department of Defense (DOD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). For a condition to be included, Senators need to support the condition and officially ask for its inclusion. Senators have many competing appropriations priorities and for them to support a condition-specific request, they need to be educated and asked to do so by their constituents.

Why It’s Important: As a result of grassroots outreach, the Senate has recognized sleep disorders and restriction as a condition eligible for study annually. This support allows researchers to compete for $370 million in federal research funding each year.

Recently, Congress finalized the DOD appropriations bill for Fiscal Year (FY) 2026 and “sleep disorders and restrictions” was once again included on the list for the PRMRP. However, Senators are now working on FY 2027 DOD appropriations bill and will be deciding which conditions will be included on the next PRMRP eligible conditions list. We need your advocacy to help ensure that we are included on this list for the upcoming FY27 bill as well.

Request: Please reach out to the offices of your Senators and ask that they “support the continued inclusion of sleep disorders and restriction in the DOD PRMRP’s eligible conditions list in FY 2027.”

Steps to Take Action:

*Complete Step 1 as soon as possible, as you will need the contact information for the Health Legislative Assistant before completing the rest.

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

Email Subject Line: RLSF: DOD PRMRP

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

2. Once you have the contact information, reach out to your Senators and ask that they support the inclusion of “sleep disorders and restriction” in the Department of Defense’s Peer-Reviewed Medical Research Program. We ask that you reach out to your Senators no later than April 30th.

3. Please consult the list below and see if one of the Senators from your state serves on the Senate Defense Appropriations Subcommittee. Please note that you can still reach out even if your Senator is not on the Subcommittee.

4. Complete the sample message below with your RLS story and send your completed letter to your Senator’s health staffer provided by Briana.

**Sample Message**

The Honorable _______

________ Senate Office Building

Dear Senator_______,

My name is [Your Name] and I am a constituent and an advocate for the Restless Legs Syndrome community. I write you today on behalf of individuals affected by Restless Legs Syndrome (RLS) to thank you for ensuring that “sleep disorders and restriction” was included in the eligible conditions for Fiscal Year (FY) 2026 and ask that you work with your colleagues to ensure that “sleep disorders and restriction” is once again listed as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) within the Committee Report accompanying the Senate’s FY 2027 Defense Appropriations Bill. .

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

I hope you will work with your colleagues in support of once again listing “sleep disorders and restriction” in FY 2027 as a condition eligible for study through the annual list on the Committee Report accompanying the Senate’s FY 2027 bill.

On behalf of RLS affected constituents, thank you for your time and your consideration of this request.

Sincerely,

[Name]

[Address]

****

It is important to reach out as soon as possible, to ensure that your congressional offices have time to review and approve the letter. Thank you for your support as an advocate! If you have questions, please email adrianna@rls.org.

• Chair: Mitch McConnell (Kentucky)
• Ranking Member: Christopher Coons (Delaware)

• Susan Collins (Maine)
• Richard Durbin (Illinois)
• Lisa Murkowski (Alaska)
• Patty Murray (Washington)
• Lindsey Graham (South Carolina)
• Jack Reed (Rhode Island)
• Jerry Moran (Kansas)
• Brian Schatz (Hawaii)
• John Hoeven (North Dakota)
• Tammy Baldwin (Wisconsin)
• John Boozman (Arkansas)
• Jeanne Shaheen (New Hampshire)
• Shelly Moore Capito (West Virginia)
• Chris Murphy (Connecticut)
• John Kennedy (Louisiana)

April 28, 2025

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.

November 4, 2024

Advocacy Action Alert: Maintaining Access to Federal Research Funding

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.

Action: Please contact your Senator and ask them to support the inclusion of "sleep disorders and restrictions" in the Fiscal Year 2025 Department of Defense Peer-Reviewed Medical Research Program (PRMRP).

Background: Each year, the United States Senate crafts an annual Department of Defense (DOD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). For a condition to be included, Senators need to support the condition and officially ask for its inclusion. Senators have many competing appropriations priorities and for them to support a condition-specific request, they need to be educated and asked to do so by their constituents. (You)

As a result of grassroots outreach, the Senate has recognized “sleep disorders” as a condition eligible for study annually. This support allows researchers to compete for $370 million in federal research funding each year.

Currently, the government is operating on a Continuing Appropriations Resolution (CR) until December 20th. Senators will be working until then on the FY 2025 DOD appropriations bill and will be deciding which conditions will be included on the next PRMRP eligible conditions list. The Senate Appropriations Defense Subcommittee released and approved an initial list that included “sleep disorders and restriction” earlier in the year. At this critical juncture, please reach out to the offices of your Senators and ask that they “support the inclusion of “sleep disorders and restrictions” in the DOD PRMRP’s eligible conditions list in FY 2025.”

Get Involved:

1. Find your Senator's contact information.

Email Matt Duquette (duquette@hmcw.org) of the Health and Medicine Counsel (HMC) and let him know that you would like to reach out to your Senator. Please include the following:

• Include "RLS Foundation: PRMRP Action Alert" in the subject line.
• Include your name and that you are part of the RLS Foundation community
• Include the state you reside in
• Copy RLS Foundation staff member, Adrianna Colucci, on your email as well, at adrianna@rls.org

We ask that you reach out to your Senators no later than December 13th.

2. Wait for an email from Matt Duquette, with your Senator's contact information

3. Email your Senator with the following 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 you today on behalf of individuals affected by Restless Legs Syndrome (RLS) to thank you for ensuring that “sleep disorders and restriction” was included in the draft list of eligible conditions. We ask that you work with your colleagues to ensure that “sleep disorders and restriction” is once again listed as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) within the Committee Report accompanying the Senate’s FY 2025 Defense Appropriations Bill. Inclusion of sleep disorders allows researchers to compete for federal funding to improve RLS treatments and seek a cure.

[Please briefly share your personal story in 2-3 sentences.]

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

Sincerely,

[Name]

[Address]

4. Send your email and wait for a response!

• You may or may not receive a response from one of the staffer's from your Senator's office. Don't be discouraged if you do not see a reply!

Thank you for participating in RLS advocacy! Please email adrianna@rls.org if you have any questions.

April 19, 2024

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!

April 16, 2024

Advocacy Action Alert: Support Sleep Disorder Research

Calling all RLS advocates! The United States Congress is currently working on the annual spending bills for FY 2025. Congressman Adam Schiff is leading an official congressional sign-on letter, asking to prioritize funding for sleep disorders awareness and research. To increase support for this letter, we ask that you reach out to your congressional House representatives today!

Why It’s Important: This letter asks the House Appropriations Committee to address the critical needs of the sleep community. 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.

Action: Please contact your House representative and ask them to sign a Congressional letter in support of federal research, scientific advancements, and public health efforts – focusing on sleep health and sleep disorders within the Committee Report accompanying House FY 2025 Labor, Health and Human Services, Education, and Related Agencies (L-HHS) Appropriations Bill. Your representative must sign-on by Monday, April 29th.

How to Participate: Email Matt Duquette (duquette@hmcw.org) at the Health and Medicine Counsel to indicate that you are interested in taking action. Be sure to provide your mailing address and zip code to help Matt identify your representative and connect you with the correct staffer. Please copy Adrianna Colucci (adrianna@rls.org) at the RLS Foundation so we can track which offices have been contacted.

Please email the staffer, attach the sign-on letter, and ask for their support. You can use the sample message below to assist with your outreach.

**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 the community’s FY 2025 appropriations sign-on letter to advance medical research in sleep, circadian, and sleep disorders, and improve public health. 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 complete this form via Quill and please contact Kaitlyn Kelly at Kaitlyn.Kelly@mail.house.gov with any questions.

[Please 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]

****

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 numerous 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! Connect with us and RSVP on our Facebook event page for more information. If you have questions, please email info@rls.org.

August 24, 2023

RLS Advocacy: One Family Shares Their Story

By Adrianna Colucci, RLS Foundation Administrative Assistant

Advocating for the RLS community and against the barriers posed by existing legislation has always been at the heart of the RLS Foundation (RLSF). Last month, RLSF Executive Director, Karla Dzienkowski, and Administrative Assistant, Adrianna Colucci, flew from Austin, TX to Washington, DC. They were joined by Dr. Shalini Paruthi, dedicated RLSF Board of Directors Chair, and her two sons, Yash and Sanjay, to meet with and educate congressional staff on RLS. Civic engagement such as legislative meetings like this one, is an integral part of the democratic process and helps politicians understand how they can better represent their constituents in policy decisions.

During this July advocacy day, RLS representatives met with Senate and House offices from Texas, where the RLSF office is located, and Missouri, the home of the Paruthi family. This opportunity brought recognition to the Foundation’s legislative priorities to help maintain a presence within federal, state and local offices. The critical issues highlighted within these meetings included increasing research funding, enhancing education and awareness, and protecting access to critical RLS therapies. Most importantly, Dr. Paruthi, Yash and Sanjay, who all have RLS, shared their personal accounts of living with the disease and how it impacts their daily lives.

The morning began in the offices of Senators Josh Hawley (MO) and John Cornyn (TX). Dr. Paruthi is Co-Director of Saint Luke's Sleep Medicine & Research Center as well as an Adjunct Associate Professor at Saint Louis University School of Medicine. Her unique perspective as both an RLS provider and an educator allowed her to speak on the importance of sleep medicine education in the medical and academic setting. Within a medical student’s own schooling, they may receive no more than one hour of education on sleep medicine. She sees the impact of this deficit as a pediatric sleep physician, since it has been shown that RLS is often underdiagnosed or misdiagnosed in children due to an adolescent’s inability to express symptoms, or symptoms being attributed to other conditions such as “growing pains” or the inability to sit still often seen with ADHD.

Yash and Sanjay, Dr. Paruthi’s children who also have RLS, shared their passion for sleep advocacy within congressional offices. For Yash, sleep and RLS awareness is particularly valuable for children and teenagers. As a high school student, he witnesses how sleep deficits impact “grades, academic performance, athleticism, and the ability to focus” in his peers. Good sleep is a necessity for everyone, especially during the developmental years of childhood and young adulthood. Proper diagnosis and effective treatments at a younger age help prevent delays in diagnosis which can lead to exacerbated health issues and increased mental health issues in adulthood. As Yash prepares for his junior year in high school, he will continue to value the importance of sleep, particularly in his planned future career as a doctor.

Rising 8th grader, Sanjay, described how his own RLS symptoms impact his sleep and daytime routines, sometimes causing difficulties in concentration in the afternoon. Sanjay is hyper-aware of the importance of sleep (thanks to his sleep specialist parents!) and notices the all-too-common discussions he has with his own friends over lack of sleep. For legislators, the most compelling narratives come from personal anecdotes, like Yash’s and Sanjay’s. Representatives from the Senate offices were engaged and asked questions to learn directly from their constituents, whose personal testaments provided insight into a disease that representatives had most likely never heard of. By providing a name, a story, and human sentiment to a cause, it allows policymakers to recognize the implications of policy on real people and their communities.

The afternoon focused on meetings with representatives from House Members Michael Burgess (TX), Marc Veasey (TX) and Anne Wagner (MO). RLSF staff continued to emphasize the necessity of funding federal programs such as the National Institutes of Health to help researchers access grants when conducting RLS clinical trials and allocating resources to programs such as the Chronic Diseases of Education and Awareness. Karla Dzienkowski, who speaks with RLS physicians, patients, and even family members daily, emphasized the need for continued research with representatives.

“Here at the RLS Foundation, we are dedicated to improving the lives of those who live with RLS, through advocacy, support, and funding research for improved treatments, ultimately a cure. Sleep disorders such as RLS continue to be misunderstood and underdiagnosed, so our goal here today is to encourage lawmakers to consider a large portion of the population that is overlooked. About 1 in 33 Americans – 3 percent of the US population – has RLS that is severe enough to need daily medical treatment. Sleep plays a critical role in the quality of life, mental health and long-term physical health and well-being. Heightened research and awareness will considerably benefit the constituents [they] represent within [their] own communities.”

Further, legislators were asked to consider RLS when forming policies surrounding prescription guidelines—policies that will address the opioid pandemic while allowing refractory RLS patients to maintain access to critical therapies, including low-dose total opioids. Each day, the RLSF staff hear from those seeking educational resources for themselves, physicians, and family members, often eager to find a way to regain control of their life and their sleep. Even after quality care is secured, unfortunately, many RLS members must plan for the unexpected—their physician’s retirement, stricter medication regulations, pharmacists unwilling to fill RLS prescriptions or stigma surrounding their management plan. These obstacles create an undue burden on a patient community that truly relies on the accessibility of their medications for stability.

For Yash and Sanjay, this was their first experience meeting and speaking with their legislative offices. Sanjay remarked on the sense of accomplishment he felt by gaining “insight into the democratic process of meeting with representatives and the importance of [his] role in advocacy” while using his voice for issues that were important to him. Advocacy can start in small ways, simply by bringing awareness to RLS in your physician’s office or by speaking with family and neighbors. However, a collective voice that echoes within the walls of your representative’s office contributes to a more robust advocacy effort.

Just like Yash and Sanjay, you can use your story to engage with legislators by joining the RLS Foundation for Hill Day in Washington, DC on October 23rd. Hill Day is an opportunity to become part of a unified movement of educators, dedicated to spreading awareness about RLS and helping legislators understand the significance of the policy that they pass. The RLS Foundation staff is excited to meet you and unite our voices on Capitol Hill! If you have questions about Hill Day, visit our FAQ page or email adrianna@rls.org. Register online now.*

Thank you to Phil Goglas and Matt Duquette of the Health and Medicine Counsel, who guided and coordinated meetings with congressional offices. Thank you to all of the representatives who dedicated their time to learning about RLS and engaging with our cause.

*Registration by October 1 for Hill Day is encouraged. This allows ample time to coordinate meetings with congressional representatives in your state and your district.

August 21, 2023

We are so excited to share details about our annual RLS Hill Day! Members of the RLS community, RLS Foundation staff, Board members and RLS physicians join together to speak with congressional representatives as their constituents. Advocacy is an integral part of our democratic process, and the RLS community’s voice deserves to be heard. Below is a brief overview of what the day may look like and commonly asked questions. If you have any further questions, reach out to adrianna@rls.org.

Tentative Agenda, Monday, October 23, 2023*

8:00 – 9:00 AM: Welcome Session at Health and Medicine Counsel, 50 F St NW, Suite 730, Washington, DC
9:00 AM: Travel 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.
**If you cannot stay for the entire day due to travel times, please let us know before Oct. 1 your approximate departure time.

Preparation

Q. What should I bring with me?

A. A valid ID will be required to enter all government buildings. Bring any notes you have prepared to share with legislators. You can take a small purse with your wallet, ID, camera, portable phone charger, or other personal effects. Water is permitted inside the building. Please leave behind prohibited items including perfumes, aerosol containers, weapons, backpacks, and suitcases as you will go through security.

Q. Is there a dress code?

A. Business casual attire is appropriate. You should wear comfortable shoes as you will be walking/standing for most of the day.

Q. What are the legislative priorities we are advocating for?

A. 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. Click here to view the complete legislative agenda.

Q. What is the Health and Medicine Counsel (HMC)?

A. 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.

Q. Will we receive training prior to visits with our representatives?

A. There are advocacy materials available on our website under the “Advocacy” Tab or can be accessed by clicking here.

A “Prep Packet” will be distributed a few weeks prior to the event and will include an itinerary, a map of the area, advocacy talking points, the Foundation’s legislative priorities, and a sample meeting outline.

On Monday morning we will have a welcome session with our HMC representatives who will prepare you for the day and answer any remaining questions.

Q. How can I prepare for Hill Day?

A. Step 1: Register at: https://www.rls.org/get-involved/advocacy. Registering in advance allows our HMC representatives to target and schedule meetings with the legislators in your state and district.

Step 2: Create your story. Meetings with representatives will be brief, so preparation is key. Remember, representatives want to hear why policies impact their constituents, which is why your story is so important.

Step 3: Check out our advocacy resources under the “Advocacy” Tab or by clicking here.

Step 4: Plan your travel including hotel reservations, car rentals, public transportation, or other necessary details.

Creating an Effective Story

Q. How do I craft a concise story?

A. Meetings last about 15-20 minutes, so it is important to be concise to allow as many people to share as possible. Prioritize the aspects of your story that represent your struggles most effectively. For more tips, watch our advocacy training video on "How to Craft a Concise Story."

Q. How long should my story be?

A. Please limit it to 3-5 minutes.

Q. What are the most important talking points?

A. Sharing your unique story helps congressional staff members understand how to better serve the constituents they represent. Highlight the struggles you faced in receiving a diagnosis, having access to treatment, and the impact RLS has on your daily life. You are the expert of your own story!

Q. How can I ensure my story is the most impactful?

A. Be respectful and courteous, regardless of political affiliation. Working with both political parties ensures we are heard regardless of who is in office.

Integrate passion into your story. The HMC and RSLF will highlight statistics and facts that support our legislative agenda, but what is most impactful is hearing from you and the very real difficulties faced by your community.

What To Expect

Q. This is my first time participating in any type of advocacy work- what should I expect?

A. Face-to-face advocacy sounds daunting, but it will not take you long to feel confident when meeting with representatives! 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 and you will receive the final schedule about a week prior. You will likely meet with 7-10 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.

Q. How is each meeting structured?

A. 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!

An HMC representative will introduce the group, each participant will introduce themself. An RLSF representative will explain what RLS is and what the RLS Foundation does. You will share your story and explain your challenges in 3-5 minutes. The HMC rep 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.

Q. What is my role in this meeting?

A. 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. Provide your realistic experience and highlight that while everyone’s story is different, there are common struggles that RLS patients endure.

Q. How is it decided which representatives we meet with?

A. HMC will organize groups, which may be based on your state residency. When coordinating meetings, they target legislators based on constituency.

Q. What do I do if I am asked a question that I do not know the answer to?

A. If you are asked a question that you do not know the answer to, no worries! You are there to share your story, not to act as a medical expert. All medical questions will be answered by staff or an appropriate medical professional in your group.

Q. Should I follow-up with the representatives I meet?

A. The RLS Foundation will track representatives spoken to and follow up accordingly. However, you can also reach out on your own by collecting the staffer’s contact information and thanking them for their time.

Q. What are some of the past successes of the Foundation’s public policy initiatives?

A. The RLS Foundation has hosted successful Hill Day campaigns and Virtual Advocacy events in the past. It has allowed us to increase engagement with legislators and meet our legislative priorities, including securing funding for research, and pushing for access to appropriate treatment.

Travel

Q. I am commuting by car. Where can I park?

A. The closest parking structure is Market Square Parking Garage located at 701/801 Pennsylvania Avenue NW. You can reserve a parking ticket in advance for reasonable prices. It is about a 20-minute walk to the meeting area.

Q. Can I commute by train?

A. The HMC office is just a short walk from Union Station.

Q. Q. I am attending the RLS National Patient Symposium. What transportation options are available to get from Baltimore to DC?

A.If you are not renting a car, you may take a taxi or use a riding-sharing service (such as Lyft or Uber) to travel to your destination. The Maritime Conference Center offers free shuttle service to and from the conference center and the MARC/Amtrak Station which has service directly to Union Station in DC.

Q. What airport should I fly in/out of?

A. If you are attending the Patient Symposium, the closest airport to fly into is Baltimore-Washington Airport (BWI). However, if you plan on attending Hill Day, the closest airport to fly out of is Ronald Reagan Washington National Airport (DCA). Make sure to schedule your flights accordingly.

Q. What hotels are in the area?

A. There are plenty of hotels in the area, both within walking distance and driving distance.

Options within walking distance:
- Phoenix Park Hotel: 520 N Capitol St. (10 min walk)
- Hilton Washington DC Capitol Hill: 525 New Jersey Ave NW (10 min walk)
- Kimpton George Hotel: 15 E St. NW (10 min walk)

Options within driving distance:
- Hilton Garden Inn: 2020 Richmond Highway Arlington (20 min drive)
- Lyle Hotel: 1731 New Hampshire Ave NW (20 min drive)
- Cambria Hotel Capitol Riverfront: 69 Q St SW (12 min drive)
- State Plaza Hotel: 2117 E St NW (13 min drive)
- Hilton Washington DC National Mall The Wharf: 480 L'Enfant Plaza SW (8 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!

April 11, 2023

RLS patients are familiar with self-advocacy, often having to play the dual role of patient and educator. Even within the medical community, a lack of understanding of RLS results in delays in proper diagnosis and treatment. Advocacy is a primary activity of the RLS Foundation, focusing on allocating funds to RLS research, increasing physician and public education, and protecting access to effective treatments.

An updated clinical guideline issued by the Centers for Disease Control and Prevention (CDC) in November failed to identify a medical exception for RLS regarding access to opioid therapy, despite exceptions being made for other medical conditions. It is important to recognize the role that low total daily doses of opioids have in providing relief for those with RLS when other treatments are not effective in controlling symptoms.

The RLS Foundation encourages everyone in the RLS community to use their advocacy voices to reach the legislative sector by participating in some of the activities suggested below!

1. Connect with Your Community

We have a network of support groups and contacts across North America that allow you to connect to the entire RLS community. Host a virtual or in-person meeting to write letters and share your RLS story with your congressional representatives. There is power in numbers. Emphasize that, without the explicit mention of RLS in CDC guidelines, state and federal agencies have the potential to deny effective treatment to the RLS community. You can visit www.congress.gov/members/find-your-member to search for your state representative’s contact information.

2. Spread Awareness

Speak to your friends, family, neighbors and healthcare providers about your experience. Educating those around you introduces them to an unfamiliar topic while encouraging them to participate in bringing about change. Social media is a great resource for sharing your message and connecting with people or groups who understand your RLS.

3. Participate in Hill Day

The Foundation hopes to host a 2023 Hill Day – a day dedicated to educating congressional representatives about the impact RLS has on physical and mental health, as well as the barriers to effective treatment. The last in-person RLS Hill Day was in 2019, when 25 members of the Foundation traveled to Washington, DC, for two days of meetings with their legislators.

You can participate in Hill Day by writing letters, submitting videos or joining the RLS Foundation team in Washington to tell your RLS story. Look for our call to action for participants in future emails, blog posts and eFriends newsletter! Learn more about making your voice heard and view the many advocacy resources on our website .

March 27, 2023

What is DEA Proposing

The DEA has proposed a change to the telemedicine prescribing rules established during the COVID-19 pandemic. This proposed change will create new barriers to treatment for those in the RLS community who have been treated via telemedicine over the past 3 years. If this change goes into effect, patients will no longer be able to receive a prescription for alpha-2-delta ligands (gabapentin, gabapentin enacarbil, pregabalin), benzodiazepines or opioids after an initial 30-day telemedicine prescription without an in-person appointment or qualified telemedicine referral (referral following an in-person doctor visit).

The RLS Foundation has certified 10 Quality Care Centers in the US where expert care is available. Telemedicine has enabled patients who live in areas where access to healthcare is limited or nonexistent to access care with a certified RLS provider.

How You Can Comment

Go to https://www.regulations.gov/commenton/DEA-2023-0029-0001 and click on the Comment box. Be succinct and tell how this prescription restriction will affect you and your quality of life. Include Docket No. DEA-407, limit your comment to 5000 characters and deadline is 11:59PM ET on March 31.

Following is the response from the RLS Foundation on behalf of the RLS community. It is imperative that each individual in the RLS community raise their voice and submit their own comment.

Requested Change in Proposed Rules

The RLS Foundation requests that the DEA change its proposed rules to exempt alpha-2-delta ligands (gabapentin, gabapentin enacarbil, pregabalin) and low-total-daily doses of opioids and comparably relax proposed rules with respect to all Schedule II-V drugs (including opioids) to permit RLS patients access to these critical treatments. Alternatively, we request a blanket exemption from the rules for patients diagnosed with RLS (ICD-10 code: G25.81). Either change can be accomplished under Exception 7 (21 C.F.R. §1300.04(i)(1)-(7)).

About Restless Legs Syndrome

RLS is a serious neurological disease affecting an estimated 12 million Americans. Patients may experience an overwhelming, agitating, and uncontrollable urge to move their legs. With symptoms peaking at night, sleep can be disrupted, exacerbating other chronic conditions and increasing the risk of depression and suicide. RLS is not chronic pain; it has a distinctly different underlying neuropathology, best managed by neurologists and/or sleep specialists.

RLS Treatment

There is a shortage of providers with the expertise to diagnose or treat RLS patients. Primary care providers are frequently unaware of the disease or current best practices, leading to long delays in diagnosis and inappropriate treatments. There are only 10 centers in the U.S. certified to provide comprehensive care; only 15% of the population is close to one of them. Thus, 85% of Americans often look to telemedicine for expert management. Diagnosis and management of RLS is based solely upon symptoms that can be evaluated as effectively through telemedicine as in person.

Existing Restrictions Already Impose Challenges to RLS Patients

Clinical experience of experts treating severe RLS with opioids has not shown drug misuse, dependence, or addiction. Results from a 2023 National RLS Opioid Registry documents that most RLS patients prescribed opioids take them in low-total-daily-doses, and generally do not exhibit dose escalation, tolerance, dependence, or opioid use disorder. Despite these facts, RLS specialists may have difficulty prescribing opioids because of institutional restrictions. Some physicians now refuse to renew long-standing opioid prescriptions. Some pharmacies reject legitimate prescriptions. Some insurers deny coverage of alpha-2-delta ligands and opioids for RLS.

Proposed Changes Create New Barriers to Treatment

Updated consensus treatment guidelines recommend iron therapy and alpha-2-delta ligands (Schedule V) as first-line treatments for RLS. Low-total-daily dose opioids -- buprenorphine (Schedule III) and methadone (Schedule II) -- are now recommended for the treatment of moderate-to-severe RLS refractory to other approaches.

Under the DEA’s proposed changes, telemedicine providers would be restricted to an initial 30-day prescription of Schedule II-V medications for RLS and is unable to provide future controlled medications without conducting an in-person exam or a qualified telemedicine referral. All telemedicine prescriptions would be required to have the notation “telemedicine prescription.” Taken together, these rules create significant barriers to accessing legitimate pharmacological treatment.

Effect of the Proposed Rules

The proposed rule changes will have a significant negative impact on RLS patients and their medical practitioners. With the difficulty that patients suffering from RLS already experience in finding a knowledgeable local doctor, any new barriers to telemedicine management would be devastating since many RLS patients are treated with controlled substances. The problem would be dramatic for those on low-total-daily-dose opioids who would face the sudden loss of the most potent treatment for refractory RLS.

Summary

RLS can be a devastating neurologic disorder, treated safely and effectively by telemedicine providers, who are often prescribing controlled substances. The DEA should consider relaxing the devastating effect that this will have on the RLS community and ease restrictions on the telemedicine prescribing of controlled substances with exemptions for medications and RLS patients as recommended above.

May 4, 2022

The Sleep Community Rallied

The RLS community responded quickly to a recent Action Alert to request our Representatives to sign on to a bipartisan letter in support of sleep disorders and sleep health disparities. On April 25, 2022, an amazing total of 36 U.S. Representatives signed that letter, which is very impressive by Congressional appropriations letter standards.

Meet the 36 Co-Signers

Please join us in thanking the bipartisan group of 36 Representatives who joined the letter including:

What If Your Representative Didn’t Sign On?

If your Representative did not sign on, it does NOT mean they didn’t support your request. All have the option to put in their requests using a confidential process rather than this public process. Also, if your Representative serves on the subcommittee that the letter is addressed to, they would not need to sign on. Securing these 36 co-signers could not have happened without all of the great efforts from this RLS community!

Thank You!

We extend a special thanks to Congressman Adam Schiff and his office for championing this letter once again this year. Thanks to all the Congressional Offices who responded to their constituents’ requests and signed on.

Thank you to all in the RLS community who reached out, shared their RLS story, and made their representative aware of the needs of their constituents: increased funding and more awareness for sleep disorders.

September 5, 2021

By Karla Dzienkowski, RLS Foundation Executive Director

RLS awareness and education are two recurring themes for individuals living with RLS. Unfortunately, healthcare providers often lack awareness of the disease and/or the clinical knowledge to manage patients according to consensus treatment guidelines.¹

Three women based in the UK, Ireland and the Netherlands joined forces to do something about it. Julie Gould, Charlotte Deerenberg and Rachel Andrews met online and decided to address the lack of RLS training offered during medical school.

In the UK, the undergraduate and postgraduate training curriculum for physicians does not include a study component dedicated to RLS that introduces the diagnostic criteria, treatment considerations and long-term management of the disease. In the US as well, medical students lack training in diagnosing neurological sleep disorders like RLS.

Lack of knowledge can have a negative impact on patients. Clinically significant RLS has an estimated prevalence of 2.7%, yet this common neurological sleep disorder is often misdiagnosed and undertreated.²

In 2017 an RLS Foundation-funded study published in Sleep Medicine found that training physicians in medical school to accurately diagnose RLS leads to lower overall healthcare costs and better health outcomes for patients.³

Deerenberg says, “Most individuals wait to see a physician until symptoms are more severe, affect daytime functioning and simple remedies (stretching, physical activity, massage) are no longer effective.”

A 2007 article in the Journal of Neural Transmission reported that it takes on average 12.7 years from the onset of symptoms for an RLS diagnosis to be made and treatment to begin – resulting in nearly 13 years of needless suffering.

When Gould, Deerenberg and Andrews recognized the absence of RLS in the curriculum to train physicians, they took a proactive approach to address this educational gap. Working together, they decided to raise awareness by creating a letter-writing campaign to educate key individuals (legislators, persons in the medical community, and leaders of organizations) about the disease. In August, 2021, The Lancet, a leading peer-reviewed medical journal, accepted and published their article, “A call for better training in restless legs syndrome.”

Andrews observes, “RLS evokes severe resistance in the medical community; individuals with RLS understand that resistance, and The Lancet overcame the resistance to RLS.”

September 23 is RLS Awareness Day. Gould says, “We seek more correspondence from The Lancet article and plan to continue our outreach to raise awareness of RLS and inclusion of restless legs syndrome in the medical school curriculum.”

Whether it is a group of concerned individuals meeting around a dining room table in Raleigh, North Carolina, to establish the RLS Foundation in 1992, or a small team collaborating online in 2021 to publish an article in The Lancet, one thing is clear to the RLS community: Our work is not yet done. Each of us needs to do our part.

What will you do to raise awareness and the need for medical education about RLS?

__________

¹Silber M, Buchfuhrer M, Earley CJ, Koo BB, Manconi M, Winkelman JW, for the Scientific and Medical Advisory Board of the Restless Legs Syndrome Foundation. The Management of Restless Legs Syndrome: An Updated Algorithm. Mayo Clin Proc.July2021;97(7):1921-1937. doi; 10.1016/j.mayocp.2020.12.026. Open Access Journal Article.

²Allen RP, Arthur S Walters AS, Montplaisir J, Hening W, Myers A, Bell TJ, Ferini-Strambi L. Restless legs syndrome prevalence and impact: REST general population study. Arch Intern Med. 2005 Jun 13;165(11):1286-92. doi: 10.1001/archinte.165.11.1286.

³Padula W, Phelps CE, Moran D, Earley CJ. Allocating provider resources to diagnose and treat restless legs syndrome: a cost-utility analysis. Sleep Med. 2017 Oct;38:44-49. doi: 10.1016/j.sleep.2017.06.034. Epub 2017 Jul 27.

September 2, 2020

September 23 is RLS Awareness Day!

This year we are celebrating RLS Awareness month by focusing on our advocacy program throughout September. We need your help to make sure everyone in Congress is #RLSAware. We’ve pulled together some ideas on how you can get involved to raise RLS awareness during September.

Here are the simple steps you'll take to get in touch with your representatives:

To find and contact your U.S. Senate Representative:

1. Visit the Senate website www.senate.gov
2. Conduct a search using the Find Your Senators pull-down menu in the upper right corner (select your state and click Go).
3. On the results page is a link to the Senator’s website, contact information, and links to an online contact form (forms vary by Senator).
4. To email: copy and paste your email script into the contact form found on their website, make edits and submit.
5. To call: choose an office location and follow the call script here.

To find and contact your U.S. House Representative:

1. Visit the House of Representatives website www.house.gov
2. Conduct a search using the Find Your Representative zip code search box in the upper right corner (enter your zip code and click Go).
3. On the results page is a photo of your Representative(s), links to the Representative’s personal website and online contact form, and a local map.
4. In the event your zip code overlaps with multiple congressional districts, the results page will include boxes for you to enter your zip code+4 or mailing address to find the correct Representative. If you need help finding your +4 zip code use the USPS Zip Code Lookup.
5. To email: copy and paste your email script into the contact form found on their website, make edits and submit.
6. To call: Look up Health Legislative Assistant (HLA) on partial list here and follow the call script here. If your HLA is not listed, call the office and ask to speak to the Health LA.

Keep an eye out for Foundation news and activities on our social media channels during September! And, after you contact your representatives please let us know here: https://www.surveymonkey.com/r/RLSAWARE

November 19, 2019

Great Progress for RLS

By Kris Schanilec

The RLS Foundation has made significant progress in advocating for the needs of RLS patients this year. Foundation leaders, staff and community members have worked in tandem to advance three goals:
1) increase RLS research,
 2) improve professional RLS education and public awareness, and
 3) ensure patients have continued access to low total daily dose opioid therapy for severe RLS.

Here are some highlights of 2019 achievements:

• Secured key congressional appropriations committee recommendations for the 2020 fiscal year that will support RLS research. – Congress continued to highlight RLS research at the National Institutes of Health through report language in its annual appropriations bills. – In September, the Senate Defense Appropriations committee once again included “sleep disorders” on the annual list of conditions eligible for funding through the Department of Defense (DOD) Peer-Reviewed Medical Research Program.
• Held the first RLS Advocacy Day on Capitol Hill in Washington on May 3. A team of 30 participants met with 45 congressional offices representing 16 states.
• Educated key legislators, agency officials, and policy makers through a grassroots base of RLS patients and a group of congressional champions both on and off the Hill.
• Mobilized 350 public comments from the RLS community on federal rulemaking regarding the opioid epidemic.
• Coordinated grassroots meetings with local congressional offices throughout the country during the August recess.
• Achieved congressional recognition of RLS Awareness Day on September 23.

“We launched the RLS advocacy initiative two years ago, and we’re making a difference,” says Karla Dzienkowski, executive director of the RLS Foundation. “Our efforts are moving the dial in terms of increased awareness and accommodation for the needs of RLS patients.

“Thank you to everyone who has met with their legislators, those who have participated in letter-writing campaigns, and all whose financial support makes this progress possible.”

How You Can Support RLS Advocacy

The RLS Foundation’s advocacy work is funded solely by gifts from generous individuals like you. Please consider supporting this important work with a donation to the RLS Advocacy Initiative.
Visit www.rls.org or call 512-366-9109. Thank you.