Restless Legs Syndrome Foundation Blog

Your Generosity Can Change Lives: The Power of Giving Tuesday

Among the busyness of the holiday season, don’t forget to pause and reflect on the friends, family and organizations that have positively impacted your 2023 year. Giving Tuesday, which is celebrated on the Tuesday following Thanksgiving, is a global movement that encourages people to contribute to the charitable organizations that largely influence their lives. As you harness compassion and generosity during this season of giving, consider extending it to the Restless Legs Syndrome (RLS) Foundation. Participating in Giving Tuesday at the RLS Foundation is an opportunity to make a difference and support those suffering from this often devastating disease.

The Impact of Giving Tuesday

Your participation in Giving Tuesday is essential for providing the means to fund critical research that aims to improve diagnosis methods, better our understanding of RLS, and develop more effective treatments. You become part of the solution to this complex medical challenge. Further, Giving Tuesday offers a unique opportunity to connect with the RLS community. People from all walks of life come together with a shared purpose – to support those living with RLS. You can become part of a supportive network that provides comfort and encouragement to individuals and families affected by RLS.

Education and Awareness

Another crucial aspect of the RLS Foundation’s mission is enhanced education and awareness. Through Giving Tuesday donations, the Foundation can create and distribute valuable resources, organize awareness campaigns, and promote a better understanding of RLS among healthcare professionals and the public. Our resources include over 30 patient handouts, a monthly webinar series, a quarterly magazine NightWalkers, and a free physician education webinar series. By participating in this annual event, you help dispel the misconceptions and stigmas often associated with the condition.

The Joy of Giving

Your participation in Giving Tuesday at the RLS Foundation extends far beyond just supporting a good cause; it’s also about experiencing the joy of giving. The act of contributing to something greater than oneself can be immensely fulfilling. Knowing that your donation, no matter how small, can make a difference in someone’s life is a powerful motivator and a source of personal satisfaction.

The importance of Giving Tuesday lies in its ability to inspire philanthropy and unity and serves as a powerful reminder of the impact we can collectively achieve as a community. Your participation will further our outreach related to RLS research, advocacy and education. So, mark your calendar for Tuesday, November 28, open your heart, and make a meaningful contribution this Giving Tuesday to help the RLS Foundation in its mission to improve the lives of countless individuals living with RLS.

The Knowledge and Comfort of Knowing You Are Not Alone = Priceless

For 31 years, the RLS Foundation has been dedicated to improving the lives of the men, women and children who live with RLS by increasing awareness, improving treatments, and funding research to find a cure for this often-devastating disease. The RLS Foundation is proud to have the only dedicated RLS Research Grant Program, which funds promising research. We are a patient services organization, committed to ensuring those in the RLS community have access to top-notch resources, support, information and much more. Membership dues from our cherished members are the lifeblood of this organization, and our work can’t be done without you, our members.

FIVE REASONS WHY YOUR MEMBERSHIP IS BENEFICIAL

1. ACCESS TO EXPERT RESOURCES

Members can tap into a wealth of knowledge about RLS, including the latest research, treatment options and management techniques. The Foundation offers comprehensive educational materials, such as educational brochures, open-access articles and webinars, which can empower you with a deeper understanding of your disease. All of our publications are available for immediate download through our Member Portal, as well as an archive of webinars on a variety of topics. Our materials are rigorously reviewed and edited by members of our Scientific and Medical Advisory Board. These RLS experts volunteer their time and expertise to ensure all our materials are up-to-date and scientifically accurate.

2. A CARING AND SUPPORTIVE COMMUNITY

Being an RLS Foundation member means you have access to a support system made up of thousands of individuals living with RLS across the globe who can empathize with what you are going through. You are no longer alone in your RLS journey. An RLS Foundation membership gives you discounted pricing on events such as our upcoming National RLS Patient Symposium, where you will meet individuals from all over the country and foster lifelong connections with those in your same shoes. Sharing personal stories, triumphs and challenges with others who can relate provides a sense of camaraderie and emotional support that can be invaluable for individuals coping with RLS.

3. CREATING YOUR LEGACY THROUGH ADVOCACY

Members of the RLS Foundation have the chance to actively participate in advocacy efforts that aim to raise awareness about RLS and improve the lives of those living with the disease. Through the Foundation’s initiatives, you can contribute to public policy discussions, promote research funding, and collaborate with healthcare professionals to advance the understanding and treatment of RLS. By joining forces with like-minded individuals and making your voice heard, you have the power to affect meaningful change and make a lasting impact on the RLS community for future generations to come.

4. THE ONLY DEDICATED RLS RESEARCH GRANT PROGRAM

As an RLS Foundation member, you contribute to the Foundation’s efforts to fund research and drive advancements in the field of RLS. The financial support from membership fees and donations directly fuels research projects such as small clinical trials to investigate new treatment options, with the end goal of finding a cure. By actively supporting these initiatives, you play an instrumental role in accelerating progress, ultimately benefiting not only yourself but also future generations affected by RLS.

5. EXCLUSIVE MEMBER-ONLY BENEFITS

In addition to the broader benefits of knowledge, community, advocacy and research advancements, RLS Foundation members enjoy exclusive perks. These include discounts on RLS Foundation merchandise in our online store, priority registration for events and conferences, and access to special member-only content in the Member Portal on our website. Four times a year, each member receives our quarterly news magazine, NightWalkers, which is meticulously planned, written and edited to deliver news about the latest happenings at the RLS Foundation and in the RLS realm. Our members also receive our Special Accommodations Card for use when traveling, along with our Medical Alert Card, which outlines medications that often trigger RLS and provides safe alternatives.

From gaining access to expert resources and support from a community of peers, to actively participating in advocacy efforts and contributing to research advancements, an RLS Foundation membership offers a comprehensive range of benefits. By joining or renewing, individuals not only empower themselves with knowledge and support but also contribute to the overall mission of improving the understanding and treatment of RLS to improve the quality of life for those living with the disease. The nominal fee to join or renew your membership is $40, but the benefits that come with it bring peace of mind in knowing that you are a member of an active and supportive community that alone is priceless.

Hope for a Better Future

My RLS started very gradually – I really didn’t think much about it at the time. About 15 minutes into my meditation, I had this creepy-crawly, gnawing feeling in my legs. I found I could tighten my leg muscles, the feeling would subside, and I could then start my day. This feeling would appear intermittently from time to time, with increasing frequency until about 18 years ago. It became such a persistent and growing problem that I had to stop meditating. Then this issue began to interfere with my sleep. Just when I started to dream, I was suddenly awakened by an uncontrollable leg jerk. That’s when I decided it was time to ask my physician about this problem.

My doctor had the vague idea that I might be suffering from restless legs syndrome (RLS). She performed a blood test to check for iron deficiency, then wrote a prescription for quinine. For those who are unfamiliar with quinine*, it really did help with my RLS, though not consistently. However, I soon discovered that quinine has an insidious and horrifying consequence. Quinine kills bacteria. My intestinal flora was now a decimated wasteland (no pun intended). To say I was a difficult person to be around was a noxious understatement. I may not contract malaria, but I was destined to live my life as a hermit, alone and without human contact.

After about six months, my wife decided to schedule another appointment with my doctor. She said she was concerned for my health; I was not convinced that was her motive. My doctor prescribed ropinirole**, a drug many with RLS have been on. Fortunately for me (and my wife) the drug worked like a dream, literally. I could finally fall asleep provided I took the medication several hours before bedtime. My downfall was that in the evening, I would fall asleep on the couch if I sat still for 10 minutes or so. This was embarrassing when went to someone’s house for dinner and would sit for conversation after the meal, and within a short while I was snoring. Eventually, I let go of my embarrassment, as my wife would explain to our hosts the challenges of my medication. I also discovered that this was a great way to escape conversations that didn’t interest me. I would just close my eyes and willfully drift off.

My next pharmaceutical experience came when I changed physicians. My new doctor suggested I try pramipexole (Mirapex). He felt it could have less of a tranquilizing effect yet still provide the RLS relief I needed. He was right. For seven or eight years, this medication was consistent so long as I took it two hours before bedtime.

But it seems all good things must come to an end. For me, augmentation started subtly. I found I needed a little bit more medication to manage my RLS. I also had to adjust my schedule by taking it a half-hour earlier. Soon the augmentation dramatically changed. On bad nights, not only did my arms and legs violently jerk, but also I could feel it in the core of my body. Some nights while trying to fall asleep on the couch, I would be in tears at 2 or 3 o’clock in the morning. “Horrible” doesn’t begin to describe the problem.

Out of desperation, and following an article in NightWalkers about augmentation, I started to search for an RLS specialist. I called the Norman Fixel Institute for Neurological Diseases at Shands in Gainesville, Florida – a three-hour drive from my home. After a thorough review of my medical history, my newest doctor started me on a regimen of 600 mg of gabapentin, increasing it to 900 mg after six months. At the next appointment, we would discuss the reduction of Mirapex. Within three weeks, I decided I needed to be more aggressive with my therapy by reducing the Mirapex sooner. Through constant communication with my neurologist and my own assertive impatience, we were able to move me out of dopaminergic dependency, replacing Mirapex with 600 mg of gabapentin within eight months of my first exam. Needless to say, I am elated. I no longer need medication before boarding a plane or taking a long road trip. I can stay up late again if I want to. Chocolate, caffeine and alcohol no longer make me twitchy. I feel so much freer than I have in decades.

I understand that each of us is unique, and results will vary, but I stand before you as a positive example of what can be accomplished. You have a whole world of RLS sufferers who are behind you, cheerleading you on to success. Don’t give up! There is always hope for a better future.

Dan and his wife, Lara, keep pretty busy with their successful optical office in Port Saint Lucie, Florida. In his spare time, his hobbies include traveling, bookbinding, jewelry making, and numerous other activities (Attention Deficit Disorder is both a blessing and a curse)! They have a five-year- old granddaughter who lives too far away in Connecticut.

*Quinine has no proven effect on RLS except for a placebo effect. Quinine may kill bacteria but there is no real documentation of negative effects on the intestinal flora. The real concern with quinine (which is why it requires prescription and only approved for treating Malaria and not leg cramps) is its rare side effects of cardiac arrhythmia and blood dyscrasias.

**Ropinirole is no longer considered first-line treatment for RLS.

Frequently Asked Questions About RLS Foundation Membership

At the RLS Foundation, we appreciate your support through membership. All RLS Foundation members can be proud of the part they play in making our mission a reality and reaching our goals to improve treatments and, through research, find a cure. If you have additional questions about membership, email info@rls.org or call (512) 366-9109.

New Membership

Q: What do I receive when I become an RLS Foundation member?

A: When you sign up for an RLS Foundation membership, you will receive a new member packet in the mail (or via email for international members) that includes the most recent edition of NightWalkers; up-to-date publications on the diagnosis, treatment and management of RLS; helpful handouts to carry with you, like the Medical Alert Card and Special Accommodations card for travel; and more! In addition to these benefits, you will gain unlimited access to resources through the online Member Portal, which contains all RLS Foundation publications, webinar recordings and an archive of all NightWalkers issues.

Q: Is there an annual membership fee?

A: The RLS Foundation receives the majority of its funding from membership and individual donations, plus a small portion from grants. RLS Foundation memberships have an annual fee of $40. Over 77% of funds raised go directly toward RLS Foundation programs, including member/patient services, awareness outreach and educational resources developed by medical experts, and funding for the only research grant program dedicated to RLS.

Q: Is my membership fee tax deductible?

A: Yes. Because the RLS Foundation is a 501(c)(3) not-for-profit organization, all contributions – including membership fees and donations – are tax deductible up to the full extent permissible by law. Emails and letters from the Foundation acknowledging your donation serve as gift acknowledgments for tax purposes.

Q: How do I become a member?

A: Choose one of three easy ways: 1) Go to www.rls.org/become-a-member to provide your contact information and pay with a credit card; 2) Call us at (512) 366-9109 to provide all information by phone; or 3) Download a new member form at www.rls.org/joinform and mail the completed form along with a check payable in US funds to the RLS Foundation. Memberships take up to 24 business hours to process.

Q: Is financial assistance available?

A: Absolutely. In addition to offering discounted membership specials twice a year, scholarship memberships are available at no cost to those in need. If Foundation membership is outside of your budget, please email us at info@rls.org or call (512) 366-9109 to request a free or discounted scholarship membership.

Membership Renewal

Q: When does my membership renew?

A: All annual memberships renew on September 30, according to our fiscal year. However, regardless of your join date, you will receive four issues of NightWalkers (equivalent to one year’s worth of membership) for the calendar year in which you join.

Q: How can I tell if my membership has expired?

A: There are several ways to check the status of your RLS Foundation membership: 1) View the back of your most recent copy of NightWalkers to locate the expiration date of your membership, printed above your name and address. 2) Go online to our website (www.rls.org), click “Member Login,” enter your username and password and click “Renew Your Membership Here.” You will be routed to a page that lists your membership details, including status. IMPORTANT NOTE: Membership status will only be listed if you are first logged into the website with your user name and password. 3) Give us a call at (512) 366-9109 or email us at info@rls.org. We’re happy to check your record in our system!

Q: How do I renew my membership?

A: Go online to our website at www.rls.org/renew, or click “Member Login,” enter your username and password, then click “Renew Your Membership Here.” You can also renew over the phone by calling (512) 366-9109 or by sending a US check payable to the RLS Foundation. Please be sure to specify “Membership” in the memo section of your check.

Q: I accidentally renewed my membership twice. Can you help?

A: A second transaction through the renewal page will be applied as an additional year of membership. If you prefer to apply this as a donation or to request a refund, please contact us right away at (512) 366-9109.

Member Portal

Q: I purchased a membership. Why can’t I open the online resources?

A: After purchasing an RLS Foundation membership, you must also create an online account to gain access to the Member Portal. Go to www.rls.org/login and click “New User Registration.” You will be asked to create a username and a password.

IMPORTANT NOTE: The password must be at least 12 characters, including at least one uppercase letter, one lowercase letter, one number and one special character, and should not include "RLS". Registration requests take up to 24 business hours to be linked to your membership record. We recommend completing this step immediately after purchasing your membership to expedite the process.

RLS Advocacy: One Family Shares Their Story

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

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

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

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

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

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

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

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

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

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

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

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

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

Tentative Agenda, Monday, October 23, 2023*

8:00 – 9:00 AM: Welcome Session at Health and Medicine Counsel, 50 F St NW, Suite 730, Washington, DC
9:00 AM: Travel to Russell Senate Office Building, 2 Constitution Ave NE, Washington, DC
9:30 – 12:00 PM: Senate Meetings
12:00 - 1:00 PM: Lunch in Senate Building Basement Cafeteria
1:00 PM: Walk to Rayburn House Office Building, 45 Independence Ave SW, Washington, DC
1:30 - 4:00 PM: House Meetings
4:00 PM: Debrief**

*This schedule is tentative and may change based on office availability.
**If you cannot stay for the entire day due to travel times, please let us know before Oct. 1 your approximate departure time.

Preparation

Q. What should I bring with me?

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

Q. Is there a dress code?

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

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

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

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

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

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

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

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

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

Q. How can I prepare for Hill Day?

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

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

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

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

Creating an Effective Story

Q. How do I craft a concise story?

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

Q. How long should my story be?

A. Please limit it to 3-5 minutes.

Q. What are the most important talking points?

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

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

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

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

What To Expect

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

A. Face-to-face advocacy sounds daunting, but it will not take you long to feel confident when meeting with representatives! You will feel a sense of unity among the members of your group knowing you have a collective mission and a sense of empowerment by being a voice for those who cannot be there.

The HMC will coordinate meetings in advance and you will receive the final schedule about a week prior. You will likely meet with 7-10 offices. An HMC representative will guide your group through the meetings.

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

Q. How is each meeting structured?

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

An HMC representative will introduce the group, each participant will introduce themself. An RLSF representative will explain what RLS is and what the RLS Foundation does. You will share your story and explain your challenges in 3-5 minutes. The HMC rep will end with our legislative priorities and request their support. The flow of your meeting will happen naturally, as your group learns how to bounce off each other’s statements.

Q. What is my role in this meeting?

A. Statistics and numbers only go so far- the most impactful statements come from those who live with RLS and can provide context for the adversities faced by the community. Provide your realistic experience and highlight that while everyone’s story is different, there are common struggles that RLS patients endure.

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

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

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

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

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

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

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

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

Travel

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

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

Q. Can I commute by train?

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

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

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

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

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

Q. What hotels are in the area?

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

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

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

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

RLS Foundation Welcomes New Board Chair, Dr. Shalini Paruthi

By Clara Schlemeyer, RLS Foundation Program Coordinator

I recently had the pleasure of interviewing Dr. Shalini Paruthi, who joined the Foundation’s Board of Directors in 2018 and became Chair this year! Dr. Paruthi also dedicates her time to the AASM (American Academy of Sleep). She is certified in both internal medicine and sleep medicine and has extensive expertise in treating both pediatric and adult patients, but her particular interest is in sleep disorders of childhood – obstructive sleep apnea, insomnia, narcolepsy, and – of course – restless legs syndrome. While treating her patients, she is also educating future doctors at Saint Louis University School of Medicine. Her willingness to teach, treat, and share her knowledge is inspiring.

Q. What was your motivation to get involved with the RLS Foundation, and why did you choose to stay involved?

A. My patients are my biggest motivators! I specialize in sleep disorders and have a specific interest in RLS, because I am also an RLS patient. It’s something that I see every day that is easily misunderstood, and there is not enough good, reliable, truthful information available for people. I think one of the most important things that physicians can do is to advocate for our patients. When Karla Dzienkowski reached out to me knowing that I had an interest in RLS, and that my primary focus is on pediatric sleep disorders, it was an excellent opportunity for me to bring my advocacy to the Foundation.

Q. As a physician who specializes in sleep disorders, what knowledge and skills do you hope to bring to the Board as you step into your role as chair?

A. One of the best parts of my day is that I am a teaching physician. I previously taught full-time at Saint Louis University and now am at Saint Luke’s Hospital in Saint Louis. In my role at St. Luke’s, I continue to teach rotators about sleep disorders. I want to make sure that they have a very strong knowledge of all the different sleep disorders, including RLS, which can be very difficult to recognize and diagnose. Sometimes patients cannot articulate their exact symptoms or the symptoms overlap with other medical disorders. As a teaching physician, in every patient visit, I am not only educating the patient but also educating the learners rotating with me.

Additionally, I chaired the program committee at the American Academy of Sleep Medicine for two years. The program committee plans the annual national SLEEP meeting, during which nearly 5,000 physicians, nurses, sleep technicians and sleep researchers gather to share knowledge and learn from one another. That experience enabled me to help with the Foundation’s educational events, such as our virtual Summits and our in-person Patient Symposium, where I served as moderator and educator.

Q. What is your favorite part about serving on this Board?

A. My fellow Board Members! I have met so many people with such different and diverse talents, backgrounds and perspectives, and every one of them is so dedicated to our mission. They want nothing more than to make sure that we are increasing RLS awareness, improving treatments and looking for the best research opportunities. Each Board member is focused on improving RLS diagnosis opportunties and ensuring wider availability of proper treatment. I just see so much passion, dedication and really great teamwork.

Q. How has living with RLS fueled your passion for helping the RLS community?

A. Having RLS, and at times suffering terribly from it, has really opened my eyes to the lack of knowledge surrounding RLS. I am very passionate about educating people about RLS and that it is a serious disorder. It can be so disruptive to a person’s quality of life or their ability to sleep well at night, which then affects their daytime function. For me, it has increased my compassion and empathy for others who suffer from RLS, and I want to do as much as I can within the RLS Foundation to increase awareness and help others know there is hope in finding a treatment that works for them. In addition, we must remind everyone that RLS is also a pediatric disorder with many young children or teenagers having RLS as their cause of insomnia.

Q. What are your future goals and aspirations for the Board?

A. The future goals for the Board are very clearly and appropriately tied to our mission. I hope to increase awareness about pediatric RLS. When a child comes to see me in the office, their parents have already tried all sorts of good sleep hygiene and techniques they have found on the internet, or followed suggestions from family and friends. Yet, they can’t understand what is being so disruptive to their child’s sleep. Often, no one has asked them questions about uncomfortable sensations in the legs or those urges to move in the evenings and the restlessness that comes along with it. Once we diagnose their RLS and begin treatment, they see a huge improvement in their child and the whole family’s interactions. As a Board we are making progress in education, and we must recognize that RLS affects the lifespan, from young children all the way up to older adults.

It is incredibly important for us to request proposals for research projects that can be funded. We have an amazing group of donors who understand just how much RLS affects others, and our best bet is to continue to fund high-quality research that will get us closer to finding better treatments and a cure for RLS. I want to express my deep gratitude for the work of the staff at the RLS Foundation; Karla, Zibby, Clara and Adrianna are an absolutely amazing, hard-working group of dedicated women who really care about people suffering from RLS.

Q. What is your biggest piece of advice for those struggling with their RLS?

A. People are their own best experts; we can recognize when something is not right within our bodies. When you don’t get a satisfactory answer about a problem you are having, it doesn’t mean that your doctor does not care or that they are dismissing you. It may just be that they don’t know enough about RLS and may not realize what an impact it is having on your quality of life. If at first you see a clinician who does not quite understand what you are saying, it does not mean that all doctors do not know about it, it just means you need to keep looking until you find the right physician who does know about RLS. Sometimes that means doing a little bit of detective work. Most neurologists should know about RLS, and even if they are not experts, they may be able to refer you either to a movement disorder specialist within neurology or directly to a board-certified sleep physician at an accredited sleep center. Being your own advocate and not settling for the first answer that you get – just being true to your body – is my best piece of advice on RLS.

To view a list of healthcare providers organized by state who have come forward expressing an interest and knowledge in treating RLS or learn more about RLS Quality Care Centers, visit www.rls.org.