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!

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 $35 in the US and $45 internationally. 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.