Restless Legs Syndrome Foundation Blog

Recognizing RLS Awareness Day on September 23

RLS Awareness Day is recognized annually every September 23 – and this year, we are recognizing it all week!

Restless legs syndrome is a serious neurological disorder that affects 10 million adults and 1.5 million children. The lack of awareness surrounding this disease means that many face lengthy delays in receiving an RLS diagnosis, receiving adequate treatment or finding a community of support who understands the impact of RLS on daily life. Each day this week, we will have a new way you can raise awareness through one of five focuses: awareness, education, research, advocacy, and building a community of support.

We encourage members of the global RLS community to take part in recognizing this important day by following us on social media, sharing our posts, taking part in our Awareness Day activities, and lending your voice to help amplify the visibility of RLS throughout the medical and public spheres.

Throughout this week, take part in one or all of our special focuses on Facebook, Instagram, X.com and LinkedIn by engaging or sharing your own personal journey using the tag #MyRLSStory.

Monday, September 23

Raising Awareness

Share one thing you wish everyone knew about RLS by responding to our posts on Facebook or Instagram!

Tuesday, September 24

Education

Refresh your RLS knowledge by viewing a video from Dr. Lourdes DelRosso, a sleep physician and professor at UCSF, and RLS expert on the intricacies of RLS in pediatrics. Stay tuned on our socials to access the recording!

Wednesday, September 25

Research

The RLS Foundation Research Grant Program has funded 50 grants, totaling nearly $2 million, in its mission to fund research that helps us gain a better understanding of the disease, improve treatments, and ultimately, to find a cure.

This year, we are excited to announce the funding of four research grants – all of which uniquely drive forward our mission! Be sure to follow us on Facebook and Instagram, so you can share this exciting news with your family and friends.

Thursday, September 26

Advocacy

There are many forms of advocacy – self advocacy as a patient, advocating for the needs of your community through legislative action, advocating for a support system, and advocating for awareness in the medical community. Learn how the Foundation supports advocacy on our socials!

Friday, September 27

Community of Support

Comment a phrase or message of hope across the RLS Foundation’s social platforms and let your fellow RLS community members know that they are not alone and there are people who understand and empathize with their experiences.

Happy RLS Awareness Day!

RLS Foundation Partners with The American Academy of Sleep Medicine Foundation (AASM Foundation) to Fund Research

The American Academy of Sleep Medicine Foundation (AASM Foundation) is pleased to join forces with the Restless Legs Syndrome Foundation (RLS Foundation) to fund research leading to new treatments and a cure for restless legs syndrome (RLS).

Earlier this year, the AASM Foundation began an agreement with the Restless Legs Syndrome Foundation to co-fund basic and clinical RLS research. The partnership for 2024 includes the following research priorities:

• Neurobiological interaction: Elucidate the points of interaction between RLS-relevant neurotransmitters, neuronal pathways, and iron deficiency.
• Pharmacologic treatments: Elucidate effects of novel pharmacological approaches on RLS.
• Clinical Practice: research based on innovations in patient care delivery including but not limited to population health programs, technology-enabled healthcare delivery (i.e. Telemedicine) and public health initiatives.

The recipient selected for this joint award is Shawn Hochman, PhD, from Emory University School of Medicine on the topic: Sensory Dysfunction in a Diet-Induced Deficiency Mouse Model of RLS: Characterization and Control by Dopamine-Sensitive Spinal Gating Circuitry.

We are excited to continue this partnership with a new grant cycle that will open later this year.

About the AASM Foundation:

The AASM Foundation is the official philanthropy of the American Academy of Sleep Medicine. Our values, programs, and purpose are focused on investing in people, research, and communities to improve the sleep health of all people. Learn more about the AASM Foundation by visiting foundation.aasm.org.

Celebrating 10 Years of Dedication!

Ten years ago, Zibby Crawford joined the RLS Foundation as the Marketing and Communications Coordinator alongside newly appointed executive director Karla Dzienkowski. This powerful duo spent weeks traveling to the Foundation’s Rochester headquarters to learn the ropes from outgoing staff and move the foundation to Austin. Ten years later, we celebrate Zibby’s 10th Anniversary with the company and her unwavering dedication.

Every organization has one individual with a vast set of experiences that makes them a “jack of all trades.” If you were to look this up in the dictionary, you’d find Zibby’s name! She has covered many areas of responsibility, from being editor of NightWalkers to planning and coordinating webinars and conferences to overseeing the Foundation’s website. She has now taken on the Membership Coordinator role. It’s a good thing she is the ultimate multitasker!

Before the Foundation, Zibby worked in the high-tech industry but fell in love with the nonprofit sector when she served on the board of the National Charity League, Capital of Texas Chapter (where she met Karla). Zibby's warm and outgoing personality makes her a joy to work with. She always has a book recommendation at the ready! She shares her experience and makes herself available to teach a new skill or lend a hand. She has raised four kids, all still living in Austin, and is now “Gammie” to four grandchildren.

Zibby’s motto is “Spread joy!” and she carries that spirit with her each and every day.

Meet the RLS Foundation's Newest Board Members!

The RLS Foundation is excited to introduce the newest members of the Board of Directors! As the Foundation’s reach expands in the public and medical realms, so does its leadership.

Jim Flaniken

Indianapolis, IN

As a retired senior executive in the food sector, Flaniken has extensive experience in business strategy and strategic planning, marketing and brand management, process reengineering, budget administration and cost control. Flaniken has RLS, noting that the Foundation has served as a “lifeline” of invaluable information and support for him in managing the disease. He was attracted to the Foundation’s mission to improve the lives of those with RLS, as he shares a passion for increasing awareness and expanding the Foundation’s impact by helping others who are also coping with RLS.

Kunal Agarwal, MD

Sarasota, FL

Agarwal is board-certified in family medicine, obesity medicine and sleep medicine. He received his bachelor’s degree with honors in neuroscience from Johns Hopkins University and his medical degree from Ross University School of Medicine. He is a fellow of the American Academy of Family Physicians and the American Academy of Sleep Medicine, and a member of the Obesity Medical Association. As a practicing physician, Agarwal is committed to advocating for RLS patients, as well as educating providers and patients about the disease and proper management. In his free time, he enjoys playing tennis, traveling, spending time with family and friends, and eating good food.

Bill Wendt

Portland, OR

Wendt manages a small construction group that provides a range of services for technology companies. Wendt grew up in central Illinois and attended the University of Illinois in Champaign. After graduating, he was hired by Intel Corporation and moved with his family to Portland, where he spent the next 35 years working in the wafer fabrication facilities at Intel. Wendt has suffered with RLS since his teenage years and credits the Foundation with helping him find a doctor who correctly diagnosed his augmentation. Wendt serves as an active Foundation volunteer leading monthly RLS Virtual Support Group meetings.

Avinash Aggarwal, MD

Pittsburgh, PA

With over 28 years of experience in neurology, Aggarwal is a distinguished physician specializing in neuromuscular and sleep disorders. As the founder and director of the Restless Leg Syndrome Quality Care Center at the University of Pittsburgh Medical Center, Aggarwal is dedicated to providing exceptional care for patients with RLS and related conditions. Her clinical interests include the treatment of RLS and other sleep and neuromuscular disorders, as well as specializing in the use of Botox in the treatment of headaches and other neurological conditions.

Donnie Kee

Diboll, TX

Kee is retired after more than 30 years in the telecommunications industry with Consolidated Communications where he held positions of Central Office Engineer, Separations Traffic Engineer, Rates and Cost Supervisor, Manager-Financial Analyst, and Product Manager. He also spent 9 years in the insurance industry with Farmers Insurance where he managed a successful agency and provided securities investing for his clients. Kee’s passion lies in giving back to the community. He lives with RLS and joined the Foundation many years ago. After seeing the benefits that the Foundation provided to those seeking help, he knew that he wanted to be a part of this organization so that he could help others in some way.

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!