Restless Legs Syndrome Foundation Blog

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!

Attending My First SLEEP Meeting: My Experience at SLEEP 2024

Yash Malhotra, RLS Foundation 2024 Intern and Founder of Kids Talk Sleep

Yash Malhotra is an RLS Foundation intern for the summer of 2024. He is also one of the founders of Kids Talk Sleep, a 501(c)(3) nonprofit whose mission is to increase awareness about the benefits of sleep for children and to distribute sleep-related items to children facing adversity in St. Louis. The Foundation is excited to have Yash on board!

My first experience at the national SLEEP meeting was memorable. The SLEEP meeting, or the Associated Professional Sleep Societies annual meeting, is a conference that focuses on sleep medicine, sleep health, and sleep and circadian research. The meeting is a joint venture between the American Academy of Sleep Medicine and the Sleep Research Society. It is a gathering of thousands of people from around the world, including sleep medicine physicians, researchers, and other health care professionals. I met with prominent sleep doctors and researchers, attended the plenary sessions, symposiums and discussion groups, visited with researchers at their research poster presentations, and explored the enormous exhibit hall that showcased the latest clinical and consumer technology.

SLEEP included postgraduate courses, networking/social events, lectures, debates, presentations, discussion groups, symposiums, workshops, and more. Researchers of all different experience levels, including students, were able to share their research work through posters and oral presentations. Much of the research presented was brand new, groundbreaking data that has not yet been published, and was fascinating to learn about.

RLS presentations at the SLEEP meeting:

While I was unable to attend all of these myself, there were a variety of sessions focusing on Restless Legs Syndrome including:

● Update and Review on RLS During Pregnancy, RLS in Childhood, RLS in Dementia, and Iron Supplementation in RLS (Postgraduate Course)

● Diagnosis and Management of RLS During Pregnancy and Lactation

● Review and Update on the Diagnosis and Management of RLS in Children

● Innovations in RLS Diagnosis and Management in Older Adults with Dementia

● National RLS Opioid Registry: Four-Year Dose Stability, Efficacy, and Tolerability

● RLS Treatment Reduces Nighttime Agitation and Increases Sleep Duration in Older Adults with Alzheimer’s Disease

One of the most enlightening sessions was the “Future of Families Cohort.” It included newly unpublished data exploring disparities in sleep from adolescence to young adulthood. This study provided insights into how socioeconomic factors influence sleep patterns over time. I learned that black and biracial young adults got less sleep than their white counterparts which was also associated with household income. Thus, there are clear racial disparities in sleep and further research is needed to promote sleep equity. I also learned that underprivileged and underserved adolescents deal with environmental factors such as urban noise and proximity to pollutants. These factors are more prevalent in disadvantaged neighborhoods, further exacerbating sleep disparities.

Another session that I found fascinating was “Helping Elite Athletes Optimize Sleep for Peak Performance.” This session discussed strategies such as sleep banking (accumulating extra sleep a couple of nights before the sports events) which can help athletes maintain peak performance, even if pre-event jitters disrupt their sleep the night before their competition. The sleep experts also discussed the importance of naps for recovery and performance enhancement. I was especially interested in attending this session because my brother, Sanjay, and I have read a lot about the importance of sleep in student athletes. As a founder of Kids Talk Sleep, we have shared this knowledge on our website (www.kidstalksleep.org) and with 4th and 5th grade elementary school students.

Overall, my first experience at the SLEEP Meeting was amazing! Over the course of just four days, I learned so much and met so many new people. I plan on coming back next year as there is so much more to explore. I highly recommend any researchers or students interested in sleep to attend at least once.

2024 Ekbom Award Recipient: Dr. Stefan Clemens

Dr. Stefan Clemens receives the 2024 Ekbom Award

On June 3, Stefan Clemens, PhD, HdR was honored with the prestigious Ekbom Award from the Restless Legs Syndrome (RLS) Foundation, in recognition of his exceptional leadership qualities. The RLS Foundation established the Ekbom Award in 1998 to honor individuals who make significant contributions to the RLS Foundation and toward enriching the lives of people who have RLS. Swedish neurologist Karl-Axel Ekbom, MD, for whom this award is named, published early reports on the disease and first named it restless legs syndrome. The RLS Foundation is grateful to the Ekbom family for allowing their name to be used for this distinguished award in honor of Dr. Ekbom and his work.

Dr. Clemens became a member of the Foundation’s Scientific and Medical Advisory Board (SMAB) in 2016. Serving as the Chair of the Research Grant Program, Dr. Clemens has significantly advanced the program's reach and impact. Under his leadership, the program has seen unprecedented growth, with a record-breaking number of proposals submitted this year. His efforts have not only amplified the program's scale but also extended its influence globally, with proposals coming from four different countries. Dr. Clemens' dedication to advancing RLS research continues to inspire the scientific community and provides hope for individuals affected by this condition.

The Foundation is pleased to have Dr. Clemens join the distinguished group of individuals who have received the Ekbom Award. Past recipients include Karla Dzienkowski, RN, BSN (2020), John Winkelman, MD, PhD (2020), Lew Phelps (2018), Christopher J. Earley MBBCH, PhD (2017), Bobbie Kittredge (2016), Michael Silber, MB ChB (2014), Bob Waterman (2008), Sheila Connolly (2005), Bob Balkam (2003), Cate Murray (2001), Richard P. Allen, PhD (2000), and Arthur Walters, MD (1998). Congratulations and thank you, Dr. Clemens!

Living with a chronic illness can sometimes feel overwhelming and burdensome. RLS is more than just physical discomfort. The debilitating symptoms associated with RLS, such as sleep disturbances, chronic fatigue, and heightened stress levels due to the constant urge to move their legs – especially during periods of rest or inactivity – can take a toll on one's mental health and wellbeing.

In fact, data shows that adults with RLS have a two- to four-fold risk of significant depression compared to those who do not have RLS.² The chronic nature of RLS symptoms, coupled with the disruption it causes to daily life and sleep patterns, can exacerbate feelings of frustration, hopelessness, and lowered mood, contributing to the development or worsening of mental health issues.

Addressing mental health concerns alongside RLS treatment is crucial for comprehensive care and quality of life. Talking openly about the mental health impact of RLS and seeking care is a vital step in breaking the stigma surrounding both conditions. Therapy, counseling, and support groups can provide individuals with coping strategies, emotional support, and a sense of community, empowering them to manage both their physical and mental health challenges more effectively. To find a support group near you, reach out to info@rls.org.

While depression can occur in anyone and at any age, acknowledging the impact of RLS on mental health and advocating for comprehensive care can aid in supporting those affected, promoting a culture of empathy, raising awareness, and encouraging understanding and acceptance. If you or someone you know is struggling with RLS or mental health concerns, remember that help is available, and reaching out is the first step towards healing and recovery.

Mental Health Resources:

If you are having any depressive symptoms, make an appointment to see your healthcare provider. The combination of depression, sleep deprivation and RLS requires a comprehensive medical exam and treatment plan to manage symptoms. 

Explore these free resources to lean on if you or someone you know is experiencing a mental health crisis:

• 988 Suicide & Crisis Lifeline offers 24/7, confidential support for people in distress. 
• SAMHSA’s National Helpline is a 24/7 treatment referral and information service. 
• FindTreatment.gov helps people seek treatment for mental and substance use disorders. 
• National Institute of Mental Health outlines additional mental health services. 

For more information on RLS and mental health, download the Depression and RLS handout or reach out to info@rls.org.

1. Substance Abuse and Mental Health Services Administration. (2022). Key substance use and mental health indicators in the United States: Results from the 2021 National Survey on Drug Use and Health (HHS Publication No. PEP22-07-01-005, NSDUH Series H-57). Center for Behavioral Health Statistics and Quality, Substance Abuse and Mental Health Services Administration. https://www.samhsa.gov/data/report/2021-nsduh-annual-national-report 
   
   
2. Hornyak, Magdolna. “Depressive disorders in restless legs syndrome: epidemiology, pathophysiology and management.” CNS Drugs vol. 24,2 (2010): 89-98. doi:10.2165/11317500-000000000-00000

Top 5 Things School Nurses Need to Know About RLS

By Anjana Ganesh, RLS Foundation Intern and Kaleigh Maxwell, RLS Foundation Program Coordinator

Research suggests that RLS affects an estimated 1.5 million children and adolescents in the US, confirming that RLS and PLMD are not unique to adulthood. In addition to healthcare providers, friends, and family members, school nurses are often active supporters of children affected by RLS and play a significant part in ensuring the child receives comprehensive care and accommodations within the school setting.

In honor of National School Nurses Day, celebrated May 8th, 2024, the RLS Foundation wants to recognize the valuable role that school nurses play for those affected by Restless Legs Syndrome and share five important facts for school nurses to understand about RLS that can in turn help them more effectively support young students with RLS:

1. Be Knowledgeable about RLS Symptoms and Diagnosis

It is important for all healthcare providers to be properly educated on the typical symptoms of RLS, including an irresistible urge to move the leg, an onset or worsening of symptoms with rest, relief with movement, following a circadian pattern, and the exclusion of mimics. Understanding the different diagnostic criteria and recognizing symptoms in children can help identify potential cases and reduce delays in diagnosis.

2. Recognize the Impact on Sleep and Functioning

RLS can significantly affect a student’s sleep quality leading to daytime fatigue, irritability and difficulty concentrating in class. Recognizing chronic exhaustion can prompt discussions for appropriate interventions and support strategies.

3. Familiarize Yourself with Common RLS Triggers

Be familiar with common triggers for RLS like stress, caffeine, and medications. Encourage students with RLS to adopt healthy lifestyle habits like regular exercise, stress management and a balanced diet.

4. Educate Other School Staff

Ensure that teachers and other staff members are aware of RLS and how it can impact a student’s well-being and academic performance. Work with staff members to create accommodations to help manage RLS during school (like seating in back of the room to permit standing or stretching during classes, priority scheduling of courses and 504 designation, if indicated).

5. Collaborate with Healthcare Providers and Families

Establish open communication channels with both the healthcare providers and families of students diagnosed with RLS or actively seeking a proper diagnosis. By contributing to student care plans, it helps ensure consistent support both at school and home.

By understanding the complexities of Restless Legs Syndrome (RLS) and implementing appropriate support strategies, school nurses can make a meaningful difference in the lives of affected students. Through collaboration with healthcare professionals, families, and educators, we can ensure that students with RLS receive the necessary care and accommodations to thrive within the school setting. Together, let us work towards creating an inclusive and supportive environment where every student affected by Restless Legs Syndrome can reach their full potential!

For additional resources and educational material, visit the RLS Foundation website.

You Can Still Go to Harvard: Leaving a Legacy Through Brain Donation

By Karla Dzienkowski, RLS Foundation Executive Director and Adrianna Colucci, RLS Foundation Communications and Marketing Coordinator

We all leave a legacy by imparting values to our family, friends and everyone we’ve touched in our communities. But have you considered extending your legacy to future generations scientific research? May 7 is National Brain Donation Awareness Day. Your brain is an intricate and complex network, making it an invaluable gift to research. Neuroscience advances our understanding of the nervous system and neurological disorders, including RLS. This insight may ultimately lead to developing more effective treatments and potentially a cure.

The Harvard Brain Tissue Resource Center (HBTRC) facilitates the collection and distribution of brain tissue, which is then made accessible to medical researchers. The HBTRC is one of six centers belonging to the NeuroBioBank (NBB) network, funded by the National Institutes of Health, and houses the Foundation’s tissue collection. For the past few years, the RLS Foundation has worked closely with agency leaders, including HBTRC Director Sabina Berretta, MD, to consolidate the process of proper identification of RLS brain donations. Collaboration among these organizations is essential for spreading awareness and making tissue available for distribution to RLS researchers.

Preregistration for brain donation is also available through The Brain Donor Project, a nonprofit dedicated to increasing awareness and simplifying the donation process. Tish Hevel, CEO of The Brain Donor Project, partnered with the NBB to help potential donors get connected to one of the brain banks in their network.

Though these conversations can be difficult, now may be the time to introduce the topic of brain donation to your family. Your family or next of kin will play a large part in honoring your wishes for donation, so preparation is important. Though preregistration is not required for brain donation, it can be helpful for potential donors and their families. Below are some quick talking points to help with the conversation.

• Brain donation is open to everyone, regardless of whether or not they are affected by a nervous system disorder. In fact, it is equally important for researchers to have access to brains that are not affected by a nervous system disorder. The “control” brain allows for comparison and furthers knowledge of the brain in general.
• Being an organ donor does not automatically make you a brain donor. There is a separate consent process specific to brain donation.
• Just one brain can have a massive impact, potentially providing data for hundreds of studies.
• Due to support from the federal government and foundations, there is no financial obligation to your family for the recovery, shipment, processing or distribution of a donated brain.

Whether you register through The Brain Donor Project or HBTRC, you can still go to Harvard. Let your next of kin know that you want your tissue to go to the HBTRC as part of your end-of-life planning. Provide them with the phone number to HBTRC at 1-800-BRAIN BANK (1-800-272-4622) or use their 24/7 on-call phone at 617-721-7162.

There is much to learn about how you can further your legacy through brain donation. If you have additional questions, be sure to visit the FAQ page on the HBTRC website at hbtrc.mclean.harvard.edu or The Brain Donor Project at braindonorproject.org. All registration forms are available on the website. Thank you for your consideration of leaving a gift that will have a lasting impact on the RLS and medical community.

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!

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.

When Should I Visit an RLS Quality Care Center?

This article is based on the QA from the webinar titled “When to Visit an RLS Quality Care Center,” presented by Avinash Aggarwal, MD. Dr. Aggarwal is the Quality Care Center Director at the University of Pittsburgh Medical Center in Pittsburgh, PA. The complete webinar recording can be found in the Member Portal on www.rls.org.

1. What is the desired outcome of a visit to a Quality Care Center? Reduced symptoms? Lifestyle changes? Dietary changes? Exercise?

When visiting a QCC, all of these issues are addressed. A thorough medical history of past and present medications, including supplements and over-the-counter medications, will identify potential RLS triggers. Physicians and patients work together to determine the desired outcome of their visit.

2. How do you ensure you will get assigned to the expert who can treat your severity of RLS?

Only the providers listed on the RLS Foundation website at www.rls.org/treatment/quality-care-centers are certified RLS experts. Patients should thoroughly research each physician on the Foundation website and ask for an appointment with the provider that is close in proximity and is a fit for all healthcare needs.

3. Which medical records do you bring to your first appointment?

Bring all medical records available and send them ahead of time, if possible. Medical records include physician notes, a list of previous medications and their side effects, current medications, and test results, specifically results from a complete iron panel.

4. What does a QCC offer me if I have a local doctor and have already tried all known classes of medications?

QCC providers think outside of the box, considering the patient’s complete history and a comprehensive neurological examination. All patients are administered the International Restless Legs Syndrome Study Group Rating Scale (IRLSSG) on both their initial and subsequent visits. With adequate treatment, the severity rating can decrease from high to extremely low, sometimes zero. As experts in the RLS field, QCC certified providers can identify triggers and treat patients based on the latest guidelines.

5. What should I expect from the first visit, and can follow-up visits be done remotely?

The first visit is typically about an hour long. A QCC provider performs a thorough history and examination, reviews the current treatment plan, and discusses available therapies. The International Restless Legs Syndrome Study Group Rating Scale (IRLSSG) is also administered on the first visit to gauge RLS symptoms. A tailored treatment plan is developed for the patient utilizing a shared decision-making process. Follow-up visits can be done remotely.

6. How can we find the QCC closest to where we live? Is there a list of locations?

There are 10 QCCs in the United States and two in Europe. A list of all centers as well as contact and appointment information is available on RLS Foundation website. If you need assistance, contact the RLS Foundation at info@rls.org.

7. How long is the wait time for an appointment?

Every center is different and wait times are variable. At the QCC in Pittsburgh, there is a cancellation list that reduces waiting time.

8. What training and expertise do the QCCs have that sets them apart?

QCC physicians are board-certified in sleep medicine and many are neurologists. All QCC providers abide by the latest RLS treatment guidelines and provide comprehensive care. QCC physicians undergo a rigorous process to be credentialed.

8. If I have visited a QCC in the past, are there any reasons I should visit one again?

If symptoms are not controlled, if there are significant side effects, or if a patient is not satisfied with disease control, another visit to a QCC may be considered.

10. Are Canadians able to visit the QCCs?

QCCs welcome patients from around the world. Patients should speak to their insurance company to determine if there is coverage or if there will be out-of-pocket expenses.

11. Can out-of-state quality care centers continue with opioid therapy?

Opioid therapy coverage depends on individual state and insurance company regulations.

12. Is there a QCC available for consultations and treatment for out-of-state patients who are not able to travel?

Since COVID, some out-of-state appointments are available. Coverage will depend on the insurer and out-of-pocket expenses may apply.

Meet the RLS Foundation's Newest Team Member!

By Adrianna Colucci, RLS Foundation Communications Coordinator

Anjana Ganesh is a senior at the University of Texas at Austin (UT). She recently joined the RLS Foundation as an intern for the remainder of her senior year. In her free time, she enjoys reading, dancing and taking walks around Austin. The RLS Foundation is excited to have her join the team!

Q. What motivated you to pursue this internship opportunity?

A. I am part of UT’s Bridging Disciplines Program, where we are exposed to interdisciplinary classes. My certificate is called Patients, Practitioners & Cultures of Care. As part of the certificate, we are required to complete an internship, and I was really interested in learning more about the nonprofit side of healthcare. I discovered the Restless Legs Syndrome Foundation in an old blog post by my program. Upon delving into its mission and objectives, I found it to be an ideal fit for me. Not only did it align with my background in neuroscience, but it also presented me with an opportunity to explore a new dimension of healthcare.

Q. What has been the most exciting part of working with a new team?

A. It has been so exciting to work at the RLS Foundation! Each person I interact with has a unique skill set, ideas and perspectives, and everyone is so willing to let me learn. I’ve found that this diversity sparks stimulating discussions, leading to fresh approaches and innovative solutions to challenges. Everyone is so supportive and kind, which creates an incredibly compassionate atmosphere where I feel comfortable sharing ideas and asking questions.

Q. You recently wrote articles for the upcoming Spring 2024 edition of NightWalkers, the Foundation’s quarterly magazine. How has writing for the magazine magnified your understanding of the adversities the RLS community faces?

A. It has been such an incredible learning opportunity to write for NightWalkers. My focus has been exploring the intricate relationship between iron and RLS, a topic that has led me to delve deep into scientific literature and conduct insightful interviews, particularly with experts like James Connor, PhD, MS. Through these interviews and research for my articles, I’ve gained a comprehensive understanding of the scientific underpinnings of RLS, particularly regarding its connection to iron deficiency. By synthesizing information from various studies and expert opinions, I’ve uncovered the complexities of how iron levels impact RLS symptoms and the potential mechanisms at play. In my research, I discovered how hard it is to find easily accessible, accurate and concise information outside of the Foundation materials. Even after finding the materials, some studies are exceedingly complex, so it requires a lot of scientific background to understand what is happening.

Interviewing Dr. Connor has provided invaluable insights into the latest research findings and treatment approaches related to iron deficiency and RLS. This has broadened my understanding of the subject matter and equipped me with the knowledge to effectively communicate these concepts to NightWalkers readers.

Q. What have you learned about RLS and why do you feel it is important to increase awareness of the disease?

A. I’ve noticed how RLS is often misunderstood or misdiagnosed, leading to delays in receiving appropriate treatment. Many individuals with RLS may suffer silently, unaware that their symptoms are indicative of a medical condition that can be managed with proper intervention. Oftentimes, physicians aren’t familiar with RLS, and that’s why resources like the Foundation’s network of RLS Quality Care Centers are so important. I think that raising awareness of RLS is essential to ensure timely diagnosis, enhance support for affected individuals, and promote advancements in research and treatment.

Q. You aspire to have a career in the medical field. How will you employ your newfound knowledge of RLS in the future?

A. As a future healthcare professional interested in pursuing neurology, I hope to integrate my understanding of RLS into my approach to patient care. By recognizing the symptoms and implications of RLS, I can effectively assess and address the needs of individuals affected by this condition. Additionally, this internship has introduced me to the importance of medical advocacy and the need for more funding and research. I hope to contribute to advancements in RLS diagnosis and treatment by advocating for improved access to resources and research funding.

The American Academy of Sleep Medicine Invites Public Comment

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

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

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

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

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

Helpful Abbreviations

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

Translation from Generic Brand Name to Common Brand Names

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

Dopamine Medications and Impulse Control Disorders

Dopaminergic medications (such as carbidopa/ levodopa, pramipexole, ropinirole and rotigotine) are frequently prescribed to treat RLS. Doctors often – though not universally – warn patients receiving the drugs that they may cause a dramatic worsening of RLS symptoms over time, an effect known as augmentation. However, few physicians and patients are aware of another serious side effect of these drugs: impulse control disorders (ICDs). Studies found 6-17% of patients on dopaminergic medications may be affected. Anyone taking these drugs needs to be aware of the potential for such effects and be proactive in educating their providers if side effects develop. As a moderator for the RLS Foundation’s Discussion Board forum, I often see this brought up in conversations, and I would like to bring awareness to it here.

ICDs show themselves as behaviors that are disturbing and out of the patient’s former patterns. They could emerge as compulsive gambling, compulsive eating, compulsive shopping, hypersexuality or punding (compulsive, repetitive behaviors). Oddly, the patient may not be aware of these new, harmful behaviors. Most ICDs are behaviors that, left unchecked, can destroy financial savings, break up families, cause excessive weight gain or destroy careers. These are serious situations that need to be identified and dealt with promptly. Family members and friends need to be alert and assertive in calling attention to these often-destructive behaviors and ensuring that they are taken seriously by both the sufferer and the medical professional.

ICD-induced compulsive gambling doesn’t refer to friendly, low-stakes, weekly poker games; light-hearted card games with friends; or occasional trips to a casino, assuming those were activities a person enjoyed before starting on the medication. Instead, it is a powerful need to take excessive and frequent financial risks for a perceived immediate gain, whether at the casino, at the horseracing track, or on day trading stocks.

Compulsive eating is another kind of ICD. Raiding the refrigerator day and night can be an indication of compulsion that may lead to rapid weight gain. To be sure, these medications can cause weight gain on their own, but compulsion needs to be ruled out if the patient eats compulsively.

Compulsive shopping does not include your daily essential purchases or even the occasional retail therapy. Compulsive shopping is an unrestrained need to buy unnecessary, sometimes unwanted, items. It is shopping purely to satisfy the desire to buy something – anything.

Hypersexuality is not simply defined as an increase in libido. It is an uncontrolled drive to participate in high-risk sexual activities that often do not include one’s typical partner. This compulsion presents an obvious risk to familial and friend relationships.

Punding is engaging in a repetitive action, such as compulsively assembling and disassembling something over and over again. Assembling a jigsaw puzzle several times in a row only becomes punding when it becomes an uncontrollable urge to work the puzzle again and again. Punding does not carry some of the dangers of the other ICDs, but it is still cause for concern and a reason to consider another medication to treat your RLS.

The one commonality that ICDs have is that the activity, though it may be of high risk and of high consequence, brings pleasure to the individual when they engage in it. The activity stimulates the dopamine pleasure center of the brain. When the patient becomes addicted to this form of stimulation and needs to fulfill the compulsion repeatedly, there can be serious long-term consequences.

As an additional danger, some studies suggest that patients with ICDs are more likely to develop an additional complication, dopamine agonist withdrawal syndrome (DAWS), a long-term condition that can cause severe depression, anxiety and other psychological symptoms that often do not respond to treatment.

Once an ICD is identified and the offending medication is discontinued or even if the dose is significantly decreased, an individual will cease all compulsive behaviors. There is no other effective treatment for the compulsive behavior. Familial support and perhaps even professional therapy may be required in some cases to repair damage to relationships that ICD-induced behavior may have caused.

Creating Connections on Capitol Hill

On February 4, 2024 RLS Foundation Executive Director Karla Dzienkowski, board chair Dr. Shalini Paruthi and staff member Adrianna Colucci traveled from their southern states to Washington, DC. Spanning two days, they met with 10 legislative offices, educating representatives on RLS and its impact on the patient community. These meetings emphasized the need for increased research funding, enhanced education and awareness and protected access to critical therapies including low-total-daily dose opioids. This visit comes at a pivotal time when committees are making key decisions on policy issues within federal agencies.

The United States Senate Committee on Appropriations, in particular, was targeted. This committee has jurisdiction over all discretionary spending in the Senate. Their responsibility is to write legislation allocating funds to federal agencies and departments each year.¹ The RLS Foundation met with the offices of Senators Jon Tester (MT), Jack Reed (RI) and John Boozman (AR), all of whom serve on the Appropriations Committee. Philip Goglas, managing partner at the Health and Medicine Counsel (HMC) and Matt Duquette, coordinated the Capitol Hill meetings. Goglas states that “we meet with appropriators because they decide how much funding the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) receive and further, what conditions are eligible for study.”

The Foundation asked that the NIH be provided with sustained funding for fiscal year (FY) 2024 of at least $50.924 billion. Researchers can apply for grants to conduct crucial RLS research through funding across relevant NIH centers.

The Foundation also requested at least $6 million in funding for the Chronic Diseases Education and Awareness Program (CDEA) at the CDC. The CDC has an active public health campaign dedicated to sleep disorders which will end in 2024.² Funding for the CDEA allows valuable public health efforts to increase education and awareness to continue.

Meetings with members of the Defense Committee and Subcommittees from both the Senate and House were also pursued, including the offices of Senators John Tester (MT), who is Chair of the Defense Subcommittee, Jack Reed (RI), and Congressman Steve Womack (AR). The Defense Committee oversees the nation’s military including the Department of Defense (DoD). The DoD Peer-Reviewed Medical Research Program (PRMRP) is a program designed to support research to enhance the health and well-being of military service members, veterans, retirees, and their family members. 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 apply for grants related to sleep medicine, including RLS. The RLS Foundation’s Scientific and Medical Advisory Board member, Dr. Brian Koo of Yale University, was awarded a research grant under the PRMRP.

The Foundation also met with members of the House Energy and Commerce and Ways and Means committees as well as the Labor Health and Human Services subcommittees which have oversight on policy affecting healthcare, specifically for opioid-related legislation. The Foundation asked for accommodations for patients who rely on the regular use of low-total-daily doses of opioids to manage their RLS. When legislation addressing the opioid epidemic is introduced, it is important to consider the needs of the RLS community by carving out the same accommodations for the use of opioids in other disorders such as sickle cell anemia, cancer and palliative care. The Foundation stressed the need for physicians to prescribe opioids appropriately and without arbitrary barriers.

Representing the RLS community as both a patient and sleep physician, Dr. Paruthi emphasized that the RLS community needs additional research to better understand the pathophysiology of RLS and to improve treatments. “We work with legislative staff to shed light on what RLS individuals suffer from and how it disrupts daily life,” she says.

Advocacy plays a pivotal role in shaping public policy, bridging the gap between the community and lawmakers. Thank you to Matt Duquette and Phil Goglas from the HMC for coordinating these meetings and leading our advocacy efforts. If you would like to learn more about how to become involved in RLS advocacy, go to https://www.rls.org/get-involved/advocacy.

¹“Committee Jurisdiction: United States Senate Committee on Appropriations.” United States Senate Committee on Appropriations, www.appropriations.senate.gov/about/jurisdiction.
²“National Healthy Sleep Awareness Project.” Centers for Disease Control and Prevention, 14 Dec. 2022, www.cdc.gov/sleep/projects_partners.html.

Progress Report #12: National RLS Opioid Registry

Relevance:

This project continues to be relevant to the Restless Leg Syndrome Foundation’s mission to improve the quality of life for those living with RLS. The National RLS Opioid Registry is collecting much-needed data on the efficacy and safety of long-term opioid treatment for RLS. Opioids have been shown to successfully treat the symptoms in patients with severe RLS, even when current approved treatments lost effectiveness; however, there is a lack of concrete data to support opioids as a treatment option. Given the current overdose crisis, data on the efficacy and safety of opioids for the treatment of RLS is needed so that providers and patients can make informed treatment decisions, especially in the face of increasingly strict opioid regulations.

Research Goals and Methodology:

By asking questions about specific opioid dosages over time (including the first stable dose) and validated questions about RLS severity (IRLS, RLS-QLI), we aimed to assess the efficacy of opioid medications in the treatment of RLS. By asking questions about specific side effects over time, we aimed to assess the tolerability and safety of opioid medications. By obtaining a medical and psychiatric history, a list of concomitant medications, and information on habits, behaviors, and mood, we aimed to further understand how these factors may influence the efficacy and safety of opioid medications in this population.

We originally set a goal to enroll 200 subjects within 2 years. We surpassed that goal, having enrolled 502 subjects. Enrollment was closed in September 2019. Upon enrollment, participants completed a phone interview lasting approximately 45 minutes. Information about RLS symptoms, past and current medications, specific dosages, and opioid side effects was collected during this interview, in addition to more sensitive information related to psychiatric conditions and opioid risk factors.

After the phone interview, participants were sent an online survey that took approximately 15 minutes to complete and was completed within 7 days of the phone interview (extensions were given under certain circumstances). This online survey collected information on medical history, sleep behavior, habits, recreational drug use, and mood. A total of 500 of 502 enrolled subjects completed the baseline survey. Every 6 months following the initial enrollment interview, participants are sent a follow-up survey that takes approximately 20 minutes to complete. The follow-up survey consists of a combination of questions from the baseline phone interview and baseline online survey, and it should be completed within 7 days. The links to access both the baseline and follow-up online surveys are sent to personal email addresses.

Recruitment

We recruited participants from established RLSF Quality Care Centers around the country, and via RLSF circulated media. Designated and interested clinicians were provided with study brochures to give to potentially eligible patients. The brochure contained the necessary contact information to enroll in the Registry, and this contact information was also provided on the RLSF website and newsletter.

Enrollment

Enrollment was limited to individuals with: a diagnosis of RLS, confirmed by the Hening-Hopkins Telephone Interview at the start of the baseline phone interview; an opioid prescription, which may be confirmed by state prescription drug monitoring programs; and a past medication history that includes a positive response to dopamine agonists for RLS treatment, as confirmed by a question about past RLS treatments.

Longitudinal follow-up

We continue to send 6-month follow-up surveys to all remaining participants (excluding those who have discontinued opioids and those who are deceased). A total of 467 participants completed the 1-year follow-up survey (97.7% retention), 458 completed the 2-year follow-up survey (95.2% retention of eligible participants), 441 completed the 3-year follow-up survey (94.1% retention), 425 completed the 4-year follow-up survey (93.6% retention), and 288 completed the 5-year follow-up survey.

At this time (December 2023), 23 subjects are considered lost to follow-up, 9 subjects withdrew, 18 subjects are deceased, and 38 subjects discontinued their opioid treatment (see Figure 1). Retention is high as a result of participant commitment and our continuing efforts to encourage participation through vigilant follow-up with participants (emails, phone calls) as well as emailing quarterly analyses data updates.

Data analyses

As of this date, we have assessed baseline, 1-year, 2-year, 3-year, and 4-year longitudinal data from the RLS Registry. These analyses revealed that in refractory RLS, prescribed opioids are generally used at low doses with good efficacy. Longitudinally over 4 years, roughly one-half of participants increased their prescribed opioid dose, though generally by small amounts, with larger dose increases accounted for by predictable features. Our 1-year data has been published in Sleep. We have also analyzed data relating to the effects of COVID on the severity of RLS symptoms just prior to, and following, the national lockdown in March 2020. Our 2-year data was presented at the annual APSS meeting (June 2021) and published in Neurology. A poster on suicidality in the Registry using the 2-year data was presented at APSS Sleep 2023 in Indianapolis, and we are in the process of publishing a manuscript on the same subject. Findings from the 3-year data were presented at World Sleep 2023 in Rio de Janeiro, and we intend to present our 4-year findings at APSS Sleep 2024 in Houston, Texas.

Ten data updates using Registry data have been sent to participants. These include data summaries such as RLS and mental health, RLS severity during the COVID-19 pandemic, the stigma of opioid treatment for RLS, suicidality in the RLS Registry, and much more. All of the quarterly updates can be accessed on the RLS Registry webpage. We plan to continue sending updates to participants on a quarterly basis.

The Registry remains open to collaborators who desire to examine specific questions relating to RLS which can be addressed through its database. One such collaborator, Dr. Elias Karroum, has been assessing the effects of painful RLS on outcomes collected through the Registry and he has submitted an abstract describing his findings to APSS Sleep 2024 in Houston, Texas.

Conclusion

At this time, we are very pleased that the Registry is obtaining the data we had hoped, and participant commitment is high, as demonstrated by low rates of attrition. We aim to accurately answer questions about the efficacy and safety of opioid medications for the treatment of RLS, and in doing so, we are keeping with the RLSF’s mission to improve the lives of those living with RLS.

RLS Foundation and American Academy of Sleep Medicine Foundation Announce Research Grant Opportunity

The Restless Legs Syndrome (RLS) Foundation and the American Academy of Sleep Medicine Foundation (AASM Foundation) today announced a new collaboration to co-fund a $50,000 grant for research on restless legs syndrome (RLS). The funding will be made available through the RLS Foundation’s Research Grant Program, which has awarded over $1.9 million in grants for medical research on RLS causes and treatments since 1997.

“The RLS Foundation’s partnership with the American Academy of Sleep Medicine Foundation signifies our shared commitment to expanding the availability of RLS research funding,” says RLS Foundation Executive Director Karla Dzienkowski.

RLS is a chronic neurological disease characterized by an irresistible urge to move the legs, especially at night. Many people with RLS endure unrelenting symptoms that severely disrupt sleep and can have a devastating impact on their well-being. “For people who live with the daily challenges of RLS, research offers hope for new, durable treatments leading to better treatment outcomes and improved quality of life,” says Dzienkowski. An estimated 7%–8% of adults in the US have RLS, and treatments are limited.

“The AASM Foundation is excited to collaborate with the RLS Foundation on funding a research grant opportunity that will contribute to our understanding of RLS and help optimize treatment options and care delivery for people with RLS,” says R. Nisha Aurora, MD, MHS, President of the AASM Foundation.

Funding priorities for the RLS Foundation’s 2024 grant cycle are:

• Neurobiological interaction that elucidates the points of interaction between RLS-relevant neurotransmitters, neuronal pathways and iron deficiency.
• Pharmacologic treatments elucidating effects of novel pharmacological approaches on RLS.
• Clinical practice that looks to innovations in patient care delivery including, but not limited to, population health programs, technology-enabled healthcare delivery and public health initiatives.
• Other research topics to advance the understanding and treatment of RLS.

To apply, researchers must submit a pre-application (letter of intent) by January 26 February 24. Selected applicants will be invited to submit a full application.

Note: Letter of Intent (LOI) deadline extended to Saturday, February 24 at 11:59 PM. All applicants informed by March 8, 2024 if their proposal will be invited for a full application.

More details and application instructions are available on the RLS Foundation website, www.rls.org.

Founded in 1998, the AASM Foundation is a not-for-profit 501(c)(3) charitable and scientific organization established by the American Academy of Sleep Medicine. The AASM Foundation has invested in the future of sleep medicine by supporting more than 300 grants totaling $25.7 million in funding. The AASM Foundation’s portfolio includes research grants for all career stages, community grants and awards and training programs. For more information, please visit foundation.aasm.org