Restless Legs Syndrome Foundation Blog

January 6, 2026

Hill Day 2026 FAQ

The RLS Foundation is hosting its annual Hill Day event on Monday, March 23. Hill Day is an opportunity to unite with fellow RLS community members to meet with legislative staffers and advocate for key issues. This is an all day in-person event, coordinated with the Health and Medicine Counsel of DC (HMC), an organization that guides the Foundation's advocacy efforts. We'd love to have you join us on Capitol Hill! Read through the FAQ below, or please email adrianna@rls.org with additional questions or concerns.

Agenda: Monday, March 23, 2026*

8:00 AM: Welcome Session at Health and Medicine Counsel: 50 F St NW, Suite 730, Washington, DC

8:45 AM: Walk to US Capitol Hill for group photo

9:15 AM: Walk to Russell Senate Office Building: 2 Constitution Ave NE, Washington, DC

9:30 – 12:00 PM: Senate Meetings

12:00 - 1:00 PM: Lunch in Senate Building Basement Cafeteria

1:00 PM: Walk to Rayburn House Office Building: 45 Independence Ave SW, Washington, DC

1:30 - 4:00 PM: House Meetings

4:00 PM: Debrief

*This schedule is tentative and may change based on office availability.

Preparation

What are we advocating for?

Put simply, we are advocating for increased funding for RLS research, enhanced awareness and education, and protected access to crucial therapies for refractory RLS which may include opioids. See the legislative agenda for details.

What should I bring with me?

A valid ID is required to enter all government buildings. Bring any notes you have prepared to share with legislators. You can take a small bag with your wallet, ID, camera, portable phone charger, or other personal effects. Water and unopened snacks are permitted inside the building. Prohibited items include perfumes, pepper spray, aerosol containers, weapons, backpacks, and suitcases as you will have to go through security.

What is the dress code?

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

The Restless Legs Syndrome Foundation is a nonpartisan organization. We are fortunate to have strong working relationships with both sides of the aisle that has resulted in continued advocacy success for our community. To maintain a nonpartisan and professional environment during our hill day, please refrain from wearing clothing or accessories with political slogans or affiliations.

What is the Health and Medicine Counsel (HMC)?

The Health and Medicine Counsel of Washington is a government relations organization that works with nonprofit organizations and companies in the healthcare industry. HMC guides our advocacy efforts, including coordinating congressional meetings.

Will I receive training prior to meeting with representatives?

There are advocacy materials available on our website under the “Advocacy” Tab. On Monday morning there will be a welcome session with HMC representatives who will prepare you for the day.

How can I prepare for Hill Day?

Step 1: Register at: www.rls.org/hill-day. Registering in advance allows our HMC representatives to target legislators in your state and district.

Step 2: Create your story. Meetings with representatives will be brief, so preparation is key. Representatives want to hear why the policies they pass impact their constituents.

Step 3: View our advocacy resources under the “Advocacy” Tab at www.rls.org.

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

What To Expect

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

Advocacy can seem daunting, but it will not take you long to gain confidence! You will feel a sense of unity among the members of your group knowing you have a collective mission and a sense of empowerment by being a voice for those who cannot be there.

The HMC will coordinate meetings in advance, but you will receive your schedule the day of. You will likely meet with 5-7 offices. An HMC representative will guide your group through the meetings.

Your group may include an RLSF employee, a Board member, an RLS expert, other RLS members and an HMC representative.

Who do we meet with?

You will meet with legislative staffers who are responsible for listening, asking questions and taking notes during the meeting. Legislative staffers are essential in helping legislators make informed decisions and effectively serving constituents.

How is each meeting structured?

You will meet with a representative from each office who is there to listen and take notes. These meetings last about 15-20 minutes. Do not be surprised if your meetings take place in a conference room, the office lobby, or even the hallway!

After introductions, an RLSF representative will explain what RLS is and what the RLS Foundation does. You will then share your story in 2-4 minutes. The HMC representative will end with our legislative priorities and request their support. The flow of your meeting will happen naturally, as your group learns how to bounce off each other’s statements.

What is my role in this meeting?

Statistics and numbers only go so far- the most impactful statements come from those who live with RLS and can provide context for the adversities faced by the community. Prepare your story in advance, as you will have 2-4 minutes to share.

How much walking is required?

Please note that congressional buildings are quite large and navigating them will involve a significant amount of walking. Based on past events, on average you will be walking six miles in total. We recommend wearing comfortable shoes and being prepared for an active day. If you have any walking impairments or mobility concerns, we recommend planning ahead to ensure a comfortable experience.

Travel

Where do we meet?

We will meet at the HMC Headquarters located at 50 F St NW, Suite 730 Washington, DC 20001.

I am commuting by car. Where can I park?

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

Can I commute by train?

Yes, the HMC office is just a short walk from Union Station.

What hotels are in the area?

There are many hotels in the area, both within walking distance and driving distance of HMC Headquarters.

Options within walking distance:

- Phoenix Park Hotel: 520 N Capitol St. (2 min walk)

- Hilton Washington DC Capitol Hill: 525 New Jersey Ave NW (3 min walk)

- Kimpton George Hotel: 15 E St. NW (3 min walk)

Options within driving distance:

- Hilton Garden Inn: 2020 Richmond Highway Arlington (12 min drive)

- Lyle Hotel: 1731 New Hampshire Ave NW (15 min drive)

- Cambria Hotel Capitol Riverfront: 69 Q St SW (10 min drive)

- State Plaza Hotel: 2117 E St NW (15 min drive)

- Hilton Washington DC National Mall The Wharf: 480 L'Enfant Plaza SW (10 min drive)

You may need to consider car rentals or ride-sharing services as a form of transportation. Be sure to reserve all accommodations in advance!

July 1, 2025

2025 Hill Day FAQ

The RLS Foundation is hosting its annual Hill Day event on Monday, October 6. Hill Day is an opportunity to unite with fellow RLS community members to meet with legislative staffers and advocate for key issues. This is an all day in-person event, coordinated with the Health and Medicine Counsel of DC (HMC), an organization that guides the Foundation's advocacy efforts. We'd love to have you join us on Capitol Hill! Read through the FAQ below, or please email adrianna@rls.org with additional questions or concerns.

Agenda: Monday, October 6, 2025*

8:00 AM: Welcome Session at Health and Medicine Counsel: 50 F St NW, Suite 730, Washington, DC

8:45 AM: Walk to US Capitol Hill for group photo

9:15 AM: Walk to Russell Senate Office Building: 2 Constitution Ave NE, Washington, DC

9:30 – 12:00 PM: Senate Meetings

12:00 - 1:00 PM: Lunch in Senate Building Basement Cafeteria

1:00 PM: Walk to Rayburn House Office Building: 45 Independence Ave SW, Washington, DC

1:30 - 4:00 PM: House Meetings

4:00 PM: Debrief

*This schedule is tentative and may change based on office availability.

Preparation

What are we advocating for?

Put simply, we are advocating for increased funding for RLS research, enhanced awareness and education, and protected access to crucial therapies for refractory RLS which may include opioids. See the legislative agenda for details.

What should I bring with me?

A valid ID is required to enter all government buildings. Bring any notes you have prepared to share with legislators. You can take a small bag with your wallet, ID, camera, portable phone charger, or other personal effects. Water and unopened snacks are permitted inside the building. Prohibited items include perfumes, pepper spray, aerosol containers, weapons, backpacks, and suitcases as you will have to go through security.

What is the dress code?

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

The Restless Legs Syndrome Foundation is a nonpartisan organization. We are fortunate to have strong working relationships with both sides of the aisle that has resulted in continued advocacy success for our community. To maintain a nonpartisan and professional environment during our hill day, please refrain from wearing clothing or accessories with political slogans or affiliations.

What is the Health and Medicine Counsel (HMC)?

The Health and Medicine Counsel of Washington is a government relations organization that works with nonprofit organizations and companies in the healthcare industry. HMC guides our advocacy efforts, including coordinating congressional meetings.

Will I receive training prior to meeting with representatives?

There are advocacy materials available on our website under the “Advocacy” Tab. On Monday morning there will be a welcome session with HMC representatives who will prepare you for the day.

How can I prepare for Hill Day?

Step 1: Register at: www.rls.org/hillday. Registering in advance allows our HMC representatives to target legislators in your state and district.

Step 2: Create your story. Meetings with representatives will be brief, so preparation is key. Representatives want to hear why the policies they pass impact their constituents.

Step 3: View our advocacy resources under the “Advocacy” Tab at www.rls.org.

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

What To Expect

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

Advocacy can seem daunting, but it will not take you long to gain confidence! You will feel a sense of unity among the members of your group knowing you have a collective mission and a sense of empowerment by being a voice for those who cannot be there.

The HMC will coordinate meetings in advance, but you will receive your schedule the day of. You will likely meet with 5-7 offices. An HMC representative will guide your group through the meetings.

Your group may include an RLSF employee, a Board member, an RLS expert, other RLS members and an HMC representative.

Who do we meet with?

You will meet with legislative staffers who are responsible for listening, asking questions and taking notes during the meeting. Legislative staffers are essential in helping legislators make informed decisions and effectively serving constituents.

How is each meeting structured?

You will meet with a representative from each office who is there to listen and take notes. These meetings last about 15-20 minutes. Do not be surprised if your meetings take place in a conference room, the office lobby, or even the hallway!

After introductions, an RLSF representative will explain what RLS is and what the RLS Foundation does. You will then share your story in 2-4 minutes. The HMC representative will end with our legislative priorities and request their support. The flow of your meeting will happen naturally, as your group learns how to bounce off each other’s statements.

What is my role in this meeting?

Statistics and numbers only go so far- the most impactful statements come from those who live with RLS and can provide context for the adversities faced by the community. Prepare your story in advance, as you will have 2-4 minutes to share.

How much walking is required?

Please note that congressional buildings are quite large and navigating them will involve a significant amount of walking. Based on past events, on average you will be walking six miles in total. We recommend wearing comfortable shoes and being prepared for an active day. If you have any walking impairments or mobility concerns, we recommend planning ahead to ensure a comfortable experience.

Travel

Where do we meet?

We will meet at the HMC Headquarters located at 50 F St NW, Suite 730 Washington, DC 20001.

I am commuting by car. Where can I park?

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

Can I commute by train?

Yes, the HMC office is just a short walk from Union Station.

What hotels are in the area?

There are many hotels in the area, both within walking distance and driving distance of HMC Headquarters.

Options within walking distance:

- Phoenix Park Hotel: 520 N Capitol St. (2 min walk)

- Hilton Washington DC Capitol Hill: 525 New Jersey Ave NW (3 min walk)

- Kimpton George Hotel: 15 E St. NW (3 min walk)

Options within driving distance:

- Hilton Garden Inn: 2020 Richmond Highway Arlington (12 min drive)

- Lyle Hotel: 1731 New Hampshire Ave NW (15 min drive)

- Cambria Hotel Capitol Riverfront: 69 Q St SW (10 min drive)

- State Plaza Hotel: 2117 E St NW (15 min drive)

- Hilton Washington DC National Mall The Wharf: 480 L'Enfant Plaza SW (10 min drive)

You may need to consider car rentals or ride-sharing services as a form of transportation. Be sure to reserve all accommodations in advance!

July 22, 2024

2024 Hill Day FAQ

The RLS Foundation is hosting its annual Hill Day event on Monday, September 9. Hill Day is an opportunity to unite with fellow RLS community members to meet with legislative staffers and advocate for key issues. The RLS Foundation works with the Health and Medicine Counsel of DC (HMC) to coordinate Hill Days. If you are interested in attending Hill Day, read through the FAQ below to find answers to all your questions! If you have further questions, please email adrianna@rls.org.

Agenda: Monday, September 9, 2024*

8:00 AM: Welcome Session at Health and Medicine Counsel: 50 F St NW, Suite 730, Washington, DC

8:45 AM: Walk to US Capitol Hill for group photo

9:15 AM: Walk to Russell Senate Office Building: 2 Constitution Ave NE, Washington, DC

9:30 – 12:00 PM: Senate Meetings

12:00 - 1:00 PM: Lunch in Senate Building Basement Cafeteria

1:00 PM: Walk to Rayburn House Office Building: 45 Independence Ave SW, Washington, DC

1:30 - 4:00 PM: House Meetings

4:00 PM: Debrief

*This schedule is tentative and may change based on office availability.

Preparation

What are we advocating for?

Put simply, we are advocating for increased funding for RLS research, enhanced awareness and education, and protected access to crucial therapies for refractory RLS which may include opioids. See the legislative agenda for details.

What should I bring with me?

A valid ID is required to enter all government buildings. Bring any notes you have prepared to share with legislators. You can take a small bag with your wallet, ID, camera, portable phone charger, or other personal effects. Water and unopened snacks are permitted inside the building. Prohibited items include perfumes, pepper spray, aerosol containers, weapons, backpacks, and suitcases as you will have to go through security.

What is the dress code?

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

What is the Health and Medicine Counsel (HMC)?

The Health and Medicine Counsel of Washington is a government relations organization that works with nonprofit organizations and companies in the healthcare industry. HMC guides our advocacy efforts, including coordinating congressional meetings.

Will I receive training prior to meeting with representatives?

There are advocacy materials available on our website under the “Advocacy” Tab. On Monday morning there will be a welcome session with HMC representatives who will prepare you for the day.

How can I prepare for Hill Day?

Step 1: Register at: www.rls.org/hillday. Registering in advance allows our HMC representatives to target legislators in your state and district.

Step 2: Create your story. Meetings with representatives will be brief, so preparation is key. Representatives want to hear why the policies they pass impact their constituents.

Step 3: View our advocacy resources under the “Advocacy” Tab at www.rls.org.

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

What To Expect

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

Advocacy can seem daunting, but it will not take you long to gain confidence! You will feel a sense of unity among the members of your group knowing you have a collective mission and a sense of empowerment by being a voice for those who cannot be there.

The HMC will coordinate meetings in advance, but you will receive your schedule the day of. You will likely meet with 5-7 offices. An HMC representative will guide your group through the meetings.

Your group may include an RLSF employee, a Board member, an RLS expert, other RLS members and an HMC representative.

Who do we meet with?

You will meet with legislative staffers who are responsible for listening, asking questions and taking notes during the meeting. Legislative staffers are essential in helping legislators make informed decisions and effectively serving constituents.

How is each meeting structured?

You will meet with a representative from each office who is there to listen and take notes. These meetings last about 15-20 minutes. Do not be surprised if your meetings take place in a conference room, the office lobby, or even the hallway!

After introductions, an RLSF representative will explain what RLS is and what the RLS Foundation does. You will then share your story in 2-4 minutes. The HMC representative will end with our legislative priorities and request their support. The flow of your meeting will happen naturally, as your group learns how to bounce off each other’s statements.

What is my role in this meeting?

Statistics and numbers only go so far- the most impactful statements come from those who live with RLS and can provide context for the adversities faced by the community. Prepare your story in advance, as you will have 2-4 minutes to share.

How much walking is required?

Please note that congressional buildings are quite large and navigating them will involve a significant amount of walking. Based on past events, on average you will be walking six miles in total. We recommend wearing comfortable shoes and being prepared for an active day. If you have any walking impairments or mobility concerns, we recommend planning ahead to ensure a comfortable experience.

Travel

Where do we meet?

We will meet at the HMC Headquarters located at 50 F St NW, Suite 730 Washington, DC 20001.

I am commuting by car. Where can I park?

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

Can I commute by train?

Yes, the HMC office is just a short walk from Union Station.

What hotels are in the area?

There are many hotels in the area, both within walking distance and driving distance of HMC Headquarters.

Options within walking distance:

- Phoenix Park Hotel: 520 N Capitol St. (2 min walk)

- Hilton Washington DC Capitol Hill: 525 New Jersey Ave NW (3 min walk)

- Kimpton George Hotel: 15 E St. NW (3 min walk)

Options within driving distance:

- Hilton Garden Inn: 2020 Richmond Highway Arlington (12 min drive)

- Lyle Hotel: 1731 New Hampshire Ave NW (15 min drive)

- Cambria Hotel Capitol Riverfront: 69 Q St SW (10 min drive)

- State Plaza Hotel: 2117 E St NW (15 min drive)

- Hilton Washington DC National Mall The Wharf: 480 L'Enfant Plaza SW (10 min drive)

You may need to consider car rentals or ride-sharing services as a form of transportation. Be sure to reserve all accommodations in advance!

February 16, 2024

Creating Connections on Capitol Hill

By Adrianna Colucci, RLS Foundation Communications Coordinator

March 17, 2023

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

Background

For the fifth 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 March 22. Take action TODAY, it is imperative! Here’s how:

1. To find the appropriate staff member who handles healthcare (the Health LA) in your Representative’s DC office, first contact our sleep community advocacy staff, Josh Fein at Fein@hmcw.org to provide your home address so Josh can identify your House Representative’s Health LA.
2. Email your Representative’s Health LA using the draft message below and attach the FY24 Sleep Sign On Letter PDF (click here to download letter). Please note, you do not need to click the “Quill” link and form mentioned in the sample email; that link only works for House offices.

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

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

To: [Your House Representative’s Health LA’s Email]
Cc: clara@rls.org
Subject: Sign On Letter – Sleep Community

Dear [Staff Member’s Name],

My name is [your name] and I am a constituent from [hometown]. I am also an advocate for the sleep community. I hope your office will join the attached Sign on Letter, which supports the sleep community’s appropriations recommendations for FY 2024. To sign on, please complete this form via Quill by the deadline of March 22nd. Please contact Kaitlyn Kelly at Kaitlyn.Kelly@mail.house.gov with any questions.

Thank you for your time and for considering this request.

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

ATTACHMENT: FY24 Sleep Disorders Sign on Letter (http://www.rls.org/file/advocacy/FY24-Sleep-Sign-on-Letter.pdf)

-----*   *-----

Questions? Email Josh Fein at Fein@hmcw.org with any questions. Thank you for raising your voice for sleep research and awareness!

October 4, 2022

The Honorable Patty Murray, Chair
The Honorable Roy Blunt, Ranking Member
The Honorable Rosa DeLauro, Chair
The Honorable Tom Cole, Ranking Member
Labor-HHS Subcommittee, Committee on Appropriations
U.S. Senate
Washington, DC 20510

Dear Chairwoman Murray, Chairwoman DeLauro, Ranking Member Blunt, and Ranking Member Cole:

Thank you for your support for critical public health initiatives and the Centers for Disease Control and Prevention (CDC). The undersigned organizations write to thank you for your ongoing commitment to the Chronic Disease Education and Awareness (CDEA) program at CDC and urge you to provide $6 million for this program in the final Fiscal Year (FY) 2023 Labor-HHS-Education Appropriations bill.

Both House and Senate bills include $6 million for this important new program, and that level of funding will allow CDC to continue to support ongoing projects and invest in new initiatives that increase public and professional awareness about chronic health conditions that do not have a designated funding line in the CDC budget.

CDC has awarded six competitive grants to improve public and professional awareness in the areas of hearing loss, lymphedema, obstructive sleep apnea, psoriasis, chronic obstructive pulmonary disease (COPD), and cystic fibrosis. Considering the strong demand for this emerging program and its potential to support additional meaningful efforts, ongoing growth in the program in FY 2023 is necessary to ensure a competitive process to address several additional chronic health care conditions.

Thank you again for your leadership in this important area and please consider our organizations a resource as you work to address chronic diseases through the CDEA program.

Sincerely,

Accessia Health
American Academy of Sleep Medicine
American Liver Foundation
American Lung Association
American Thoracic Society
Autoimmune Association
Circadian Sleep Disorders – Network
Coalition of Skin Diseases
Digestive Disease National Coalition
Dorney-Koppel Foundation
Dystonia Medical Research Foundation
Dystonia Advocacy Network
GBS|CIDP Foundation International
Gaucher Community Alliance
Good Days
Hope Charities
Hypersomnia Foundation
International Foundation for GI Disorders
KLS Foundation
Lymphatic Education & Research Network
Narcolepsy Network
National Alopecia Areata Foundation
National Eczema Association
National Pancreas Foundation
National Psoriasis Foundation
National Scleroderma Foundation
NephCure Kidney International
Project Sleep
Pulmonary Hypertension Association
Restless Legs Syndrome Foundation
Sleep Research Society
Society for Research on Biological Rhythms
Start School Later
US COPD Coalition
US Hereditary Angioedema Association
wAIHA Warriors
Wake Up Narcolepsy

July 30, 2020

Why Your Voice Matters

By Kris Schanilec

Your advocacy efforts have been paying off! In October 2017, the RLS Foundation launched an advocacy initiative to inform federal policy makers about restless legs syndrome (RLS) with three main goals in mind: increasing funding for research, protecting appropriate access to opioid therapy, and expanding physician education and public awareness.

Many members of the RLS community have done their part in pursuing these goals by reaching out to their federal and local representatives via email, letter or phone – as well as joining the Foundation in Washington, DC, last May for RLS Advocacy Day on Capitol Hill. As a result, Congress continues to highlight RLS medical research at the National Institutes of Health (NIH) through report language in annual appropriations bills; and the Department of Defense continues to pursue important research on sleep disorders.

You may be wondering, “How does this affect me?” Educating legislators about the concerns of RLS patients puts necessary pressure on Congress to continue funding major research institutions, which in turn allocate resources to further research on RLS and sleep disorders in general – bringing scientists closer to finding better treatments and ultimately, a cure.

The proof is in the grant allocations that have been awarded to key researchers in the field, including members of the Foundation’s very own Scientific and Medical Advisory Board. Brian B. Koo, MD, who is the director of the Yale Center for Restless Legs Syndrome (an RLS Quality Care Center), recently received a grant from the Department of Defense for his work on RLS and hormones. Dr. Koo and his team at Yale University are investigating whether the levels of melanocortin hormones are increased in the blood and cerebral spinal fluid of people with RLS. If you are interested in participating, see details on www.rls.org.

Likewise, RLS Foundation advisory board member James Connor, PhD, at Penn State University received a grant from the National Institute of Neurological Disorders and Stroke to investigate iron deficiency and the RLS brain, in collaboration with David Rye, MD, PhD, and Lynn Marie Trotti, MD, MSc, both of Emory University. Dr. Trotti is the director of the Emory Sleep Center – an RLS Quality Care Center. Together, these researchers have developed models that will help to determine how cerebral spinal fluid from RLS patients affects the iron transport at the blood brain barrier.

Also funded by the NIH are RLS Foundation advisory board member Kathy Richards, PhD, RN, FAAN, of the University of Texas; and Christine Kovach, PhD, RN, FAAN, of the University of Wisconsin. They received a large grant from the National Institute on Aging to improve the treatment of nighttime agitation in people with Alzheimer’s disease. The researchers hypothesize that RLS may be a cause for nighttime agitation and sleep disturbance in these individuals.

These experts have made significant advances in the field of RLS research. Dr. Koo is one of the world’s foremost experts on the epidemiologic research that links periodic limb movements during sleep and cardiovascular disease. Dr. Connor is a leader in understanding the cellular and molecular mechanisms by which cells regulate iron. Dr. Rye was part of an international team that identified the first gene variant associated with RLS. And, Dr. Trotti is a two-time recipient of the American Academy of Sleep Medicine Foundation Strategic Research Award for her work on central disorders of hypersomnolence, RLS and sleep in neurodegenerative disease.

In addition to their work in research, these experts also work directly with the RLS Foundation to increase their impact on the RLS community. Drs. Connor, Koo and Trotti are all members of the RLSF Scientific and Medical Advisory Board. Dr. Koo and Dr. Trotti serve as the directors of the Yale Center for Restless Legs Syndrome and the Emory Sleep Center, respectively. Dr. Rye is a certified RLS provider at the Emory Sleep Center. Finally, Dr. Koo and Dr. Trotti play a significant role in educating the public, as the medical editor of NightWalkers and the author of the “In the News” column, respectively.

RLS Foundation Scientific and Medical Advisory Board member John W. Winkelman, MD, PhD, of Harvard University; and board member Jeffrey Durmer, MD, PhD, of Fusion Health; have attended numerous meetings with policy makers to advocate the needs of RLS patients.

Christopher Earley, MB, BCh, PhD, FRCPI, also adds a powerful voice to RLS advocacy in Washington. Dr. Earley is not only the chair of the RLS Foundation’s Scientific and Medical Advisory Board, but also the director of the John’s Hopkins Center for Restless Legs Syndrome, an RLS Quality Care Center. He has joined the RLS Foundation in Washington on multiple occasions to advocate for the needs of RLS patients, healthcare providers, and researchers. Dr. Earley is conducting an NIH-funded study to evaluate epigenetic changes in DNA from blood (lymphocytes) and from brain autopsy in individuals with and without RLS.

Here is Dr. Earley’s take on the recently funded research projects: “The truth is, restless legs syndrome is something that most people don’t know about, and definitely very few people understand. When it comes to competing for grant-based money whether through the National Institutes of Health, National Science Foundation, or Department of Defense, name recognition is important. The RLS Foundation’s presence in Washington, DC, has been very important in enhancing visibility of the name and the disease. This gives us a fighting chance for competitive grant money when measured up against heart disease, cancer, and neurological conditions like Alzheimer’s disease. Further work is needed. Each visit to Washington increases the possibility of giving RLS higher visibility on grant-supported initiatives.”

July 17, 2020

Compelled to Act

By Stephen Smith, RLS Foundation member and volunteer

Two years ago, when the RLS Foundation announced the Advocacy Program, I knew this was something that I had to do. What follows are my advocacy actions over the past two years. However, I believe that everyone needs to step up and become involved in advocacy in some way. Advocacy does not necessarily mean that you need to make a trip to Washington, DC. You can become involved by writing letters to your congressional representatives, visiting their local office to tell your RLS experience to a staffer in person, or simply responding to calls to action from the Foundation where you respond to government requests for comment. Just providing your financial support to the Foundation’s programs is another way to participate in the Advocacy Program.

To get involved, check out the Foundation’s Advocacy web page www.rls.org/get-involved/advocacy. Please don’t let everyone else carry the load. You CAN make a difference, just like me!

Here is my advocacy story. My RLS requires the use of opioids for treatment, yet the political climate in the town where I live is such that almost none of the doctors in town are willing to prescribe them for any reason other than surgery. Everyone says that "someone should do something" and I knew that in this case, that "someone" had to be me.

As per the Foundation instructions on how to get involved, I contacted the Health and Medicine Counsel of Washington (HMCW), the Foundation’s policy advisors in Washington, DC. Almost immediately, I received a reply email with detailed instructions on how to contact the local offices of my Congressional representatives. I was instructed to talk about my life with RLS, the problems that it causes for me, and three different issues that the Foundation was asking Congress for help with. I was also provided a set of "leave behind" documents to give to the Congressional staffers I met with.

A Welcome Reception

At all three visits, I was warmly received by the staffers and all the meetings went very smoothly. I was also able to make personal connections with each person I spoke with. After talking to me, one of the staffers said that she now suspects that her daughter may have RLS, which she would discuss with her pediatrician at their next visit. A week after the meeting, I sent thank-you emails to each person I spoke with and all three replied to let me know that they had passed the "leave behind" information along to their staff in Washington. My Congressman's staffer even contacted me a few weeks after that to tell me about an RLS related development at the regional Veteran's Affairs office, which covers part of the Congressman's district.

And then last May, I was fortunate enough to be able to travel to Washington, DC to participate in the Foundation's “RLS Advocacy Day on the Hill.” This was a fascinating experience and a real-life civics lesson. We were divided up into teams by state, briefed about how the visits would proceed, and then each team visited a number of offices for the states represented on the team. I was fortunate that the office of my Congressman, Scott Tipton, was one of the offices that we visited. At each office, the constituent for that member of Congress would say something about the challenges of living with RLS and then the group would join in to cover the various issues of interest to the Foundation, just like I did during my local visits the previous summer.

The call went out again in July that it was time to once again visit with the local offices. Further, it was suggested that these visits should be timed to fall during the August Congressional holiday, when all of our representatives return home for local visits. We received an updated set of issues to discuss and new "leave behind" documents. When I called Congressman Tipton's office, his district director remembered me from the previous year, and we chatted a bit about RLS while he checked his calendar. I had a major stroke of luck as Congressman Tipton himself would be in town the following week and there was a one-hour-opening in his schedule. When I told the HMCW staff about this, I received a special request to ask Congressman Tipton to sponsor a Congressional Resolution recognizing RLS Awareness Day on September 23.

The following week, I was excited to be able to meet Congressman Tipton in person, to have a chance to talk with him directly about the issues that we face with RLS, and to specifically ask for his help to recognize RLS Awareness Day. The meeting went wonderfully. I found out that Congressman Tipton had several close friends with RLS, so he was somewhat aware of the challenges that we face. When I asked Congressman Tipton if he would sponsor the Congressional Resolution for us, he readily agreed.

In mid-September I received an email from HMCW asking for help. There was some sort of snag in the process of getting the RLS Awareness Day resolution processed through Congressman Tipton's Washington office. HMCW asked me to contact my local office to push from my end while they also worked to clear the problem in Washington. An email to the district director in my local office resulted in an almost immediate reply that yes, he remembered that Congressman Tipton had agreed to sponsor the resolution and that he would call Washington immediately. With some additional support from our HMCW team located in Washington, fifteen minutes later, the snag had been cleared. So, on Wednesday, September 18, Congressman Tipton read into the Congressional Record a resolution recognizing September 23 as RLS Awareness Day.

You probably will not be called upon to help obtain a Congressional Resolution recognizing RLS Awareness Day, but you just might be able to educate your three congressional representatives about RLS – and that just might be enough to help us get that critical final vote to pass a bill in Congress that benefits those of us with RLS.

Stephen Smith is a dedicated member and volunteer at the RLS Foundation. He is always eager to participate in any way possible to promote RLS awareness and education. Steve has served as a Discussion Board Moderator for over five years, answering questions and providing resources at all hours of the day and night online with other discussion board moderators. He gives many people hope and the knowledge that they are not alone by sharing his RLS story on video, seen on www.rls.org and on our YouTube channel. He is an avid runner and has retired from a demanding career in the high-tech industry and moved to Colorado with his wife, Deb, for better climate and a more relaxed lifestyle.

May 1, 2020

Building Momentum During the COVID-19

On April 24th, the RLS community celebrated the first Virtual RLS Advocacy Day with support and guidance from the Restless Legs Syndrome Foundation. Virtual RLS Advocacy Day provided individuals in the RLS community the opportunity to join together, as one, to educate our legislators about RLS and to ask for their support on key legislation of importance to our community from the comfort of their homes.

Our advocacy partner, the Health and Medicine Counsel of Washington (HMCW) presented a webinar led by Phil Goglas, Legislative Director on April 16th to educate and familiarize individuals in the RLS community about the advocacy process. He explained that Congress is currently making decisions for program spending in the next fiscal year. Our representatives rely on concerns voiced by their constituents to guide them in the legislative process.

The COVID-19 health crisis provided a unique opportunity for individuals to participate in RLS advocacy without the need to travel. This year, “Even with everything currently happening with COVID-19, 45 RLS advocates used their collective voices on behalf of the entire community to advocate for key priorities that would benefit all in the RLS community,” says Goglas. RLS advocates from 18 different states spoke out as a community and successfully contacted 105 legislators’ offices: 70 Senate and 35 House of Representatives. The calls to legislative staff along with emails sent by RLS constituents allowed our community to seek support for healthcare provider education, increased RLS research funding and appropriate access to opioid therapy for severe RLS.

Thank you Advocates

The RLS Foundation is incredibly proud of the RLS community’s participation. “The first Virtual RLS Advocacy Day was a resounding success. I thank every RLS advocate who reached out to their representatives during this difficult time to raise awareness and to educate legislators about RLS,” says Karla Dzienkowski, Executive Director of the RLS Foundation. The advocacy movement created by this virtual event educates our senators and representatives about RLS and how it impacts the lives of thousands of their constituents. “Your work as an RLS advocate is critical to making the case for RLS in federal funding in these program areas during the congressional appropriations process,” says Dzienkowski. The Foundation would like to thank all of you who took the time to share your personal RLS story with your representatives, to advocate for RLS legislation priorities and to share your interactions with your legislators with us. We will continue to monitor and report the outcomes from your advocacy outreach on Virtual RLS Advocacy Day.

How You Can Keep the Momentum Going

It’s never too late to get in touch with your legislators. Here’s what you need to know:

• Read our legislative and policy priorities to be informed about our current requests.
• Use the RLS prep packet for instructions on how to contact your representatives by phone or email. You’ll find phone call and email scripts to copy into your email – all you need to do is add your personal RLS story. Once you send emails or make phone calls please report back to us here.
• Share your story with us. Let us know how RLS impacts your daily quality of life and the importance of access to low total daily dose opioids for your treatment. With your permission, we will use your experience when speaking to legislators to illustrate the impact that RLS has on millions of Americans.
• The RLS Foundation’s advocacy efforts are made possible through gifts from generous supporters. To make a donation, visit www.rls.org or call 512-366-9109.

#VirtualRLSAdvocacyDay #RLSAdvocacy

April 21, 2020

Speaking Out During “Stay at Home” Orders

COVID-19 may keep us apart, but we can all stand together to let Congress know that nearly 12 million Americans live with RLS and we must be heard. Our original plans for RLS advocates to travel to Washington, DC for “RLS Hill Day” have changed due to “stay at home” orders.

This unique situation provides each of us in the RLS community the opportunity to participate in this day of virtual advocacy by calling or emailing our representatives to educate them about RLS and to ask for their support in specific policies and legislation. We’re calling it Virtual RLS Advocacy Day and we are looking for anyone with RLS, and anyone who loves and cares for someone with RLS, to join in this campaign on Friday, April 24th, to let lawmakers know what the RLS community needs in order to manage this misunderstood disease.

What Makes this Day Different?

The RLS Foundation has partnered with the Health and Medicine Counsel of Washington (HMCW) for over three years to coordinate and direct our advocacy efforts. Working together, we have coordinated multiple trips to Washington DC to meet with key legislators in person to discuss our concerns and ask for their support in specific legislation and policy. What we have learned is that your representative wants to hear YOUR story. You can make a difference. You, the constituent, must reach out to your representatives with your personal RLS story and let them know how they can effect change in your life with our priority legislation.

What are the Priorities

We have narrowed down our requests to the following four areas currently under consideration in Congress. We all need to ask our representatives to support these initiatives on our behalf:

• Increase funding at the National Institutes of Health—$44.7 billion in the FY 2021 Labor-HHS-Education Appropriations bill to fund critical research to find treatments and a cure for RLS.
• Continue to include “sleep disorders” as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) in the FY 2021 Defense Appropriations Bill.
• Protect the needs of RLS patients who depend on appropriate access to low-total daily dose opioid therapy to manage the most severe forms of the disease when all other treatment options have proved ineffective. Ensure that RLS patients retain access to physician-directed care and treatment using opioids in any legislation, policy or regulations.
• Support provider education to minimize misdiagnosis and incorrect treatment of this misunderstood disease. The CDC’s National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) supports several programs that work to increase public awareness and improve professional education. Please provide $5 million for the National Neurological Conditions Surveillance System (NNCSS) and $5 million for a Chronic Diseases Education and Awareness Program.

Why Contact your Representatives?

Hearing from constituents can make a powerful difference in how legislators view and vote on issues. Making a phone call or sending an email allows you to tell your RLS story. When you explain how RLS affects your everyday life—impacts your job, curbs your ability to travel, makes it impossible to get a full night’s sleep—you put a face on this misunderstood disease and gain support from our lawmakers.

How YOU Can Make a Difference

We want this to be as easy as possible for everyone to join us on this first Virtual RLS Advocacy Day on Friday, April 24. We have gathered all the information you need to make phone calls or send emails, or both!

• Before Friday, download the Prep packet from the Advocacy page on our website (www.rls.org). There you will find instructions on how to contact your members of Congress. We have provided an email template and a call script – you simply add your personal RLS story.
• Watch the recorded webinar “How to Prepare: Virtual RLS Advocacy Day” or download the webinar slides to find out what you need to know before you make your calls or send emails.
• Read the RLS Foundation’s legislative priorities if you want more details on each issue.
• If you prefer to make phone calls, you will likely be directed to the staffer that handles health issues (Health Legislative Assistant or HLA). We have a partial list of the HLAs in the Prep packet. Check to see if your member of Congress is listed for their phone number and HLA.
• Finally, after you have completed your calls or emails, please let us know who you contacted and if they requested additional information so that the Foundation can follow up with this request. It helps to know which members of Congress have been contacted to determine the effectiveness of this campaign and to identify potential RLS champions in Congress. Complete this short survey after your contacts.
• If you have any questions before or during Virtual RLS Advocacy Day please give us a call at 512.366.9109 or email amber@rls.org.

February 28, 2020

"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.

February 17, 2020

2020 Federal Spending Package Supports RLS Research

By Kris Schanilec

The RLS Foundation continues to advocate for the RLS community on Capitol Hill and across federal agencies. 2019 was an active year, and the Foundation was successful in helping to secure recommendations from Congress through the appropriations process.

Notably, the federal funding bill encourages sleep disorders research at the National Institutes of Health (NIH) – and for the first time, specifically lists “restless legs syndrome.” In late December, Congress passed its final bills, and the president signed both to fund the government in fiscal year 2020.

Following are some of the key recommendations and funding that were included in this important legislation.

Medical Research

National Institutes of Health (NIH):

• Congress appropriated $41.7 billion for the NIH – an increase of $2.6 billion over the 2019 fiscal year. The RLS Foundation worked alongside the broader patient community to ensure that the NIH received a substantial increase in funding to continue vital research that will benefit patients.

• Congress included the following recommendations:

Sleep and Circadian-Dependent Mechanisms Contributing to Opiate Use Disorder. The funding bill specifically recognizes work by the National Institute on Drug Abuse (NIDA) and the National Institute of Neurological Disorders and Stroke (NINDS) to address the opioid crisis through innovative research directions. The bill notes “the promise that research on sleep and circadian mechanisms can play in the prevention and treatment of opiate use disorder” and encourages relevant NIH institutes and centers to work collaboratively to “continue the exploration of innovative research pathways.”

Sleep Disorders. The bill commends “the recent expansion and advancement of the sleep and circadian research portfolio under the coordination of the National Center on Sleep Disorders Research (NCSDR),” and “encourages dedicated research activities on specific sleep disorders, such as narcolepsy and restless legs syndrome, to ensure scientific progress benefits patients impacted by debilitating conditions disordering their sleep and biological rhythms.”

The fiscal year (FY) 2020 NIH Congressional Justification (a document with detailed estimates and justifications for research activities) also emphasizes that restless legs syndrome research continues to be a promising direction for the NCSDR.

Department of Defense:

• The Peer-Reviewed Medical Research Program has been funded at $360 million for FY2020, and sleep disorders has been included again as a category eligible for funding.

Professional Education

Centers for Disease Control and Prevention (CDC):

• Congress budgeted $5 million for the National Neurological Conditions Surveillance System. This initiative aims to expand surveillance of neurological conditions, providing data to increase the understanding of these disorders and to further support neurological research. The system will initially focus on multiple sclerosis and Parkinson’s disease, with the goal to eventually expand surveillance of many neurological conditions.

Department of Veteran’s Affairs:

• Sleep Disorders. The Department of Veteran’s Affairs was previously directed by Congress to assign a program manager for sleep disorders. The new funding bill requires that the Department provide an update to Congress by June 30, 2020. This is an important first step in improving coordination of sleep disorders research across federal agencies and in broader activities.

None of this progress would be possible without the many RLS patients and others across the country who have connected with their legislators locally and in Washington to share their personal stories.

While the RLS community has accomplished much, more needs to be done. In 2020, Congress will continue to take legislative action on funding the government, advancing critical research, and addressing the opioid crisis. The RLS Foundation will continue to advocate for appropriate access to opioid therapy at low total daily doses for RLS patients through targeted outreach to federal agencies and key congressional committees.

The RLS Foundation is looking for individuals to get involved in legislative activities and share their experiences with leaders in Washington. Are you ready to step up? To learn more about RLS advocacy and to view free educational webinars, visit the Advocacy page at www.rls.org or contact the Foundation at info@rls.org.

May 22, 2019

2019 RLS Advocacy Day on Capitol Hill

By Kris Schanilec

Thirty members of the RLS community from across the US gathered in Washington, DC, on May 3 for the first RLS Advocacy Day on Capitol Hill.

RLS patients and Foundation staff were joined by Jeffrey Durmer, MD, PhD, a member of the Foundation’s Scientific and Medical Advisory Board; and Sandra Katanick, a member of the Board of Directors; for a whirlwind day of meetings with congressional offices. An RLS Foundation delegation also met with congressional staff on May 2. Over the two days, the Foundation met with a total of 45 congressional offices, representing 16 states from across the country and including key members of committees that shape health policy.

Policy makers are currently debating which issues they will take on throughout this session of Congress. It is essential that RLS patients make themselves heard during these deliberations.

“Our first advocacy day exceeded everyone’s expectations,” says Karla Dzienkowski, executive director of the RLS Foundation. “This was an exciting opportunity for staff and RLS community members to join forces to advance our goals. We made headway in educating key offices that can champion our legislative agenda.”

Advocacy Day took place at the heart of the federal appropriations process, when Congress designates dollars to fund specific areas of the government – and at a time when Congress is engaging in oversight activities to implement key legislation that addresses the opioid epidemic: the Comprehensive Addiction and Recovery Act (CARA), and the SUPPORT for Patients and Communities Act.

The day began with a prep session led by the Health and Medical Counsel of Washington (HMCW). “Most folks don’t know what restless legs syndrome is, including people who make decisions at the highest level of government,” says Peter Herzog, a legislative associate at HMCW. “That’s where decision-makers rely on their staff who focus on these issues, on expert opinion, and on their constituents. RLS patients are both experts and constituents, and their input matters to legislators.”

Participants formed five teams, each with an agenda of back-to-back meetings about every half-hour, in the senate and house office buildings.

In the meetings, they shared their stories and challenges of living with RLS. They advocated for support on three key issues: increasing research funding for RLS, protecting appropriate access to opioid therapy for patients with severe RLS, and expanding RLS physician education and public awareness.

Donna Rivers and her husband, Martin, traveled from Oregon to participate. “It amazed me how little most people know about RLS. I was happy to be a part of that education process,” says Rivers, who volunteers as an RLS support group leader in Portland. “The experience was empowering in that I felt our plight as RLS sufferers was recognized. I believe the education provided to legislative staffers will be heard by our representatives.”

Rosemary Stader, who traveled from Ohio with her husband, Gregory, says that most of the congressional staff appreciated the meetings. “I think we made a difference! The people we saw were interested; they were engaged, wrote down notes, and I think they will support our cause.”

“It was win, win, win,” says Julie Herbert, from Missouri. “I got to advocate for the needs for those of us with RLS, to exercise my rights as a citizen, and to spend time with some wonderfully interesting people, many of whom also have RLS, reinforcing my awareness that I am not alone. One more win: I became increasingly aware of the great work that the folks at the RLS Foundation are doing on our behalf."

“I feel like anything we do to take action with regard to our RLS gives us more strength to deal with a disorder, which so often leaves us feeling frustrated and helpless,” Herbert adds. “I’m so glad I went.”

The RLS Foundation would like to thank all who participated in RLS Advocacy Day on Capitol Hill, all who joined in spirit, those who submitted letters and responded to calls to action, and those who continue to generously provide financial support for RLS advocacy efforts.

• Learn more about RLS advocacy.
• Read “Opioids: Are RLS Patients Getting Caught in the Crossfire?”
• Support our work! Become an RLS Foundation member, or make a donation.
• Stay tuned! Raise your voice in Washington by responding to our upcoming calls to action.

December 4, 2018

RLS Foundation Returns to Washington

By Kris Schanilec

In November, an RLS Foundation delegation again joined the Health and Medical Counsel of Washington (HMCW) in Washington, DC, to visit the offices of legislators and federal agencies involved in health care policy.

The meetings took place at a critical juncture in the midst of the nationwide opioid crisis. The government is moving to implement H.R. 6, the SUPPORT for Patients and Communities Act. This law, passed in October, calls for tactics to promote treatment and recovery from opioid addiction, and to improve prevention.

Many people with severe RLS find themselves caught in the crossfire. Even though there is no federal legislation or policy that prohibits prescribing opioids for RLS, the increased scrutiny of prescribing practices has physicians increasingly reluctant to use them; some have stopped prescribing opioids altogether.

"The Foundation's opioid advocacy initiative has already made significant progress, but the issue is far from resolved,” says Lew Phelps, chair of the RLS Foundation Board of Directors. “We were successful in ensuring that Congress didn't include anything in the recent opioid legislation that would have harmed the ability of RLS patients to obtain needed and appropriate treatment. However, the implementation of this legislation still presents potential challenges. We have to stay engaged to help ensure that physicians continue to be allowed to prescribe opioids for RLS."

In the DC meetings, a Foundation team led by Executive Director Karla Dzienkowski emphasized that opioids are a legitimate and critical treatment for severe RLS. About 1 in 33 Americans – 3 percent of the US population – has RLS that is severe enough to need daily medical treatment. When all other treatments have failed, opioids at low total daily doses are highly effective at alleviating RLS symptoms, and clinical guidelines are available for healthcare providers to use them appropriately.

“It’s important to spread the word that there are medically appropriate uses of opioids taken in low total daily doses,” says John Winkelman, MD, PhD, director of the RLS Quality Care Center at Massachusetts General Hospital. “We need to help doctors with safe prescribing – not overprescribing, but more effective and safe prescribing.” With support from the RLS Foundation, Dr. Winkelman is conducting a study to better understand the long-term safety of opioids in RLS.

Dr. Winkelman and Jeffrey Durmer, MD, PhD, of Fusion Health, joined the delegation on behalf of the Foundation’s Scientific and Medical Advisory Board. Sandra Katanick represented the RLS Foundation Board of Directors, and also the RLS patient community.

In the meetings the Foundation also stressed the importance of federal funding for research for the National Institutes of Health and the Department of Defense, both of which have growing portfolios in sleep disorders research.

Agency meetings: Making the RLS patient voice heard

The Foundation team met with the US Department of Health and Human Services (HHS) Pain Management Inter-Agency Task Force, led by Vanila Singh, MD.

The new opioid legislation requires HHS to study the impact of federal and state laws and regulations that limit opioid prescribing and submit a report to Congress. The Pain Management Inter-Agency Task Force is specifically charged with finding any gaps or inconsistencies in existing clinical best practices for managing acute and chronic pain.

It is critical for this report to acknowledge that opioids are used differently to treat RLS than to treat chronic pain, so that RLS patients continue to have appropriate access to opioid medications. Dr. Singh and her colleagues showed a strong understanding of RLS and the need for this accommodation, says Dzienkowski. “They were very receptive to the needs of the RLS community.”

The HHS Task Force will soon publish a draft of its recommendations, and the public will have the opportunity to comment over a 90-day period. The Foundation will notify the RLS community when this comment period begins with a call to action through its eFriends monthly newsletter and other channels. (Sign up to receive eFriends.)

The Foundation also met with the Centers for Disease Control and Prevention (CDC), which has issued a guidelines for prescribing opioids for chronic pain; and with the Substance Abuse and Mental Health Services Administration (SAMHSA), whose representatives sit on advisory groups to health care policy committees and working groups throughout the federal government. These meetings were a strong first step in building relationships within the two agencies. In follow-up, the Foundation will meet again with the CDC in December.

Congressional visits: ‘We now have RLS champions in Congress’

The RLS Foundation met with staff in the offices of Sen. Lamar Alexander (R-TN), Sen. Elizabeth Warren (D-MA), Sen. Bill Nelson (D-FL), Sen. Kamala Harris (D-CA), Sen. John Cornyn (R-TX), Sen. Johnny Isakson (R-GA), Rep. Rosa DeLauro (D-CT), Rep. Frederica Wilson (D-FL), Rep. John Yarmouth (D-KY) and Rep. John Lewis (D-GA).

Many of the Congressional staff members said that they are hearing from their constituent communities about barriers to treatment or providers unwilling to prescribe opioids in light of the new law.

Katanick observes, “I think we made a very compelling argument for the safe prescribing of opioids for conditions other than chronic pain, and the legislators’ duty to be certain that any rulemaking is not so restrictive that it actually harms patients.”

“We now have RLS champions in Congress,” says Dzienkowski. “In this round of meetings in Washington, we’ve seen a definite increase in awareness and support for the RLS community.”

“I want to thank everyone who has made donations to the Foundation’s advocacy initiative, responded to our calls to action, or met with their elected officials. At the Foundation, we are hearing from many people with severe RLS who are having trouble accessing their opioid medications. With your help, we are making a difference – for the RLS community today and for generations to come.”

The meetings were coordinated by HMCW, a government relations organization with nonprofit and health care industry expertise that is partnering with the RLS Foundation to guide its advocacy efforts. Also attending were Kris Schanilec of the RLS Foundation; and Dale Dirks, Dane Christensen, and Peter Herzog of HMCW.

To make a financial gift in support of the RLS Foundation Advocacy Initiative, visit www.rls.org.

More information

• Learn more about RLS advocacy and how to take action.
• Learn how to participate in the National Opioid RLS Registry.
• Read about the Foundation’s advocacy trips to Washington in February and June 2018.
• Watch for a complete update on RLS advocacy in the next issue of NightWalkers magazine, coming in February.

JULY 15, 2018

In June, the RLS Foundation visited Washington for a second round of meetings to advocate for research funding and for continued patient access to opioid medications to treat severe RLS.

Led by Executive Director Karla Dzienkowski, the Foundation team met with members of Congress who are on key legislative committees that have jurisdiction over health policy, and with two groups at the National Institutes of Health (NIH).

“Our meetings at Congress and the NIH were very important to moving our advocacy program forward,” Dzienkowski says. “We had the opportunity to meet with Congressional staff who are directly involved in opioid-related legislation. We are also excited to be deepening our relationships at the NIH and taking meaningful steps to advance RLS research.”

The Foundation team met with staff in the offices of Sen. Sheldon Whitehouse, D (RI); Sen. Bob Casey, D (PA); Sen. Elizabeth Warren, D (MA); Rep. Markwayne Mullin, R (OK); Rep. Conor Lamb, D (PA); Rep. Katherine Clark, D (MA); and Rep. Michael Burgess, R (TX).

The discussions centered on the need for a safe harbor for RLS in any upcoming legislation or policy that might restrict access to opioid medications. “Staffers shared that over 50 opioid bills are under consideration,” says Dzienkowski. For the millions of Americans who have chronic, unrelenting RLS, opioid medications taken in low total daily doses can be very effective for controlling symptoms.

The Foundation team also asked legislators to support two research priorities: $2 billion in increased funding for the NIH in fiscal year 2019; and continued inclusion of “sleep disorders” as a category eligible for grants by the Department of Defense.

At the NIH, John Winkelman, MD, PhD, gave a presentation on behalf of the Foundation to the Sleep Disorders Research Advisory Board (SDRAB) of the National Heart, Lung, and Blood Institute. Dr. Winkelman is director of the RLS Quality Care Center at Massachusetts General Hospital and a member of the Foundation’s Scientific and Medical Advisory Board.

The SDRAB is a federal advisory committee that sets the strategy for sleep disorders research at the NIH, and the meeting was an opportunity to highlight the unmet needs of RLS patients. RLS Foundation Board member Linda Secretan is one of two patient advocates on the SDRAB.

In his presentation, Dr. Winkelman discussed limitations of RLS treatments and the importance of research, including his current study to evaluate the long-term use of opioids to treat RLS.

“We had a very positive discussion,” Dr. Winkelman says. “It was important to describe the existing landscape of RLS treatment options, particularly as not everyone at the table was fully aware that many people with RLS continue to suffer for a variety of reasons, such as augmentation. It was equally important to raise awareness about the effectiveness of low total daily doses of opioid medications as a therapy for severe RLS.”

The Foundation also visited the National Institute on Drug Abuse and met with members of the Division of Neuroscience and Behavior, which supports research on drug use and addiction. Dr. Winkelman led a lively discussion on the neuroscience of RLS and how new drug therapies might be developed to treat the disease.

“We’re always looking for new ways to intervene to prevent or treat RLS,” Dr. Winkelman says. “We discussed what we already know about what causes RLS in the brain, and the various ways we might learn more about the neurological pathways involved. We came away with new ideas to explore for research.”

The meetings were coordinated by the Health and Medicine Counsel of Washington (HMCW), a government relations organization with nonprofit and healthcare industry expertise that is partnering with the RLS Foundation to guide its advocacy efforts. In addition to Dzienkowski and Dr. Winkelman, the delegation included Kris Schanilec, RLS Foundation communications; and Dane Christiansen, Dale Dirks and Peter Herzog of HMCW.

How You Can Take Action

The RLS Foundation is working hard to advocate on behalf of the RLS community. The Foundation needs you, an RLS patient or family member, to amplify these efforts by meeting with your legislators. You can meet with your members of Congress at offices in your home state or in Washington. Elected officials want to hear directly from their constituents, and sharing your personal experiences is the best way to educate them about the needs of RLS patients.

The Foundation has resources to help you get started. Contact Peter Herzog at herzog@hmcw.org or visit www.rls.org to learn more.

RLS Advocacy: Our Progress

Since October 2017, the RLS Foundation and its partners at HMCW have:

• Delivered letters to members of Congress from 200+ individuals who responded to a request for personal stories about opioid medications and RLS. 
• Attended Congressional meetings and hand-delivered position letters to committees that are crafting legislation related to opioid medications and/or biomedical research funding. These efforts helped support passage of the FY2018 appropriations bill, securing a $3 billion increase in funding to the NIH. 
• Delivered 40 letters to members of the Senate Defense Appropriations Subcommittee from RLS Foundation members who responded to an Action Alert to support inclusion of “sleep disorders” on the Department of Defense Peer Reviewed Medical Research Program in FY2019. 
• Met with 23 Congressional offices, three NIH institutes, the NIH Sleep Disorders Research Advisory Board, and the U.S. Food and Drug Administration (FDA). 
• Coordinated or supported meetings by the RLS Foundation team and Foundation members with US senators and representatives of 13 states.

Why Are Opioids Needed for RLS?

About 1 in 33 Americans – 3 percent of the US population – has RLS that is severe enough to need daily medical treatment. Unfortunately, treatment options are limited, and FDA-approved medications for RLS often have serious, long-term side effects.

When all other options have failed, opioids at low total daily doses are an established, highly effective treatment option for people with RLS. Clinical experience among experts has not shown the degree of drug misuse, dependency or addiction commonly associated with opioid use to treat chronic pain. The RLS Foundation actively conducts educational outreach to help ensure that healthcare providers know how to diagnose and treat RLS, including appropriate use of opioid medications. For more information, visit www.rls.org.