August 21, 2023

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!