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!