Take Action This Summer!

During the summer, elected officials in Washington break for recess and return to their home states. This is an excellent time to meet with and educate them about RLS, how opioid restrictions are affecting access to necessary treatment, and why more RLS research is needed to find a cure.
The Foundation needs you, a valued and essential member of the RLS community, to join in this important work. Your representatives need to hear your personal story about the struggles of living with RLS. These personal anecdotes put a face to the disease and are crucial to share so that legislators are fully aware of the needs of the RLS community when making legislative decisions.
Not sure where to start? It's easier than you think. The RLS Foundation’s advocacy partners at the Health and Medicine Counsel of Washington (HMCW) are available to assist you in planning and implementing these meetings with your representatives. Contact Peter Herzog at herzog@hmcw.org, or keep reading for information on how to get started.

First Steps

Find out who your representatives are. Each US citizen has three representatives in Congress: Two in the Senate, and one in the House of Representatives. You can find out who they are at www.senate.gov and www.house.gov. Just enter your zip code into the search bar in the top right-hand corner of the page to bring up their names. Many of these officials have offices both in Washington and locally, so select the office closest to you.
Reach out to HMCW. Contact Peter Herzog at herzog@hmcw.org, and he will provide you with talking points, a prep packet and other information to help with the meetings. He may also be able to help schedule meetings.
Make an appointment. Call the office of each representative and request an appointment to discuss issues that you and others with RLS are facing. You will likely be given an appointment with a staff member. Keep in mind that you will be meeting as an individual in the community and not as a representative of the RLS Foundation. If you are a Foundation member, please share this during your meeting.
Strength in numbers. You are not alone! Get a group of friends, family members or other RLS patients to go with you to the meeting. You can also find others who have RLS via the Foundation's Discussion Board, support groups and social media channels.

Resources

While you may have many items that you wish to discuss with your representatives, focusing these particular meetings on issues related to RLS will help make the most impact. The goal is to educate your representatives about RLS, how opioid-related legislation affects you and the RLS community, and why more research funding is needed. The Foundation has a variety of resources to help you accomplish this.
Webinar recordings. The Foundation and HMCW have presented two RLS advocacy webinars, available for free viewing in the "Get Involved" section at www.rls.org. These webinars contain excellent introductory information to RLS advocacy efforts and provide an overview of how you can get involved.
“Statement of Principles.” This document (provided in your prep packet) will be your "North Star" during the meetings and help guide your discussion. While you do not need to memorize all of this information, it will provide the basics about RLS, why more research is needed and why opioid therapies are necessary for patients with severe cases of RLS. Available for free download in the "Get Involved" section at www.rls.org.
HMCW. The Foundation has engaged HMCW staff to guide and focus advocacy efforts on behalf of the RLS community. They are available to help! Email Peter at herzog@hmcw.org with any questions or if you need additional information.

During the Meeting

What to expect. Congressional staff should be friendly and courteous. Remember, they work for you! Their goal is to help you in any way they can, and your “asks” will give them an opportunity to do so. You should arrive 15 minutes early for your meeting and dress in business casual attire. Make sure to print the leave-behind materials beforehand (provided by HMCW or available for download at www.rls.org), as you will be giving them to staff members during your meetings. Keep in mind that you will have 15–20 minutes to make your case, so be ready to start right in with the discussion.
Introductions. Start by thanking the staff member for meeting with you. Introduce yourself and talk about where you are from, then introduce everyone in the group. Be sure to keep the introductions brief so that most of your time is spent educating the representative about the needs of the RLS community. Give the staff member the leave-behind materials to reference during your discussion.
Defining RLS. The person you meet with may not know about restless legs syndrome, so it is important to define what it is. Here is a suggested explanation: “Restless legs syndrome (RLS) is a serious and chronic neurological disease. It causes unpleasant or uncomfortable sensations in the legs, together with an uncontrollable urge to move them. These symptoms can cause severe sleep loss, which can be devastating to a person’s health and well-being, and interfere with work, family and social life. There is no cure for RLS, and treatments are limited.”
Tell your RLS story. How do RLS symptoms impact you day-to-day? What challenges does RLS pose for your work, social life and family relationships? Do you have issues accessing medical care? Everyone's RLS is unique, and it's important to focus on your own experience and how RLS impacts your life.
Introduce the “asks.” Your prep packet provided by HMCW will include a sample meeting outline with specific requests, or “asks,” to make of your legislator. Make sure to review these materials before your meeting. You may want to write down some key points on a note card for reference. In the meeting, state the “asks” clearly and concisely, or read them from the document. Staffers will want to learn how their office can help you, and these “asks” are the best way for them to do so.
Responding to questions. The person you are meeting with may have some questions. If you are asked a complex question that you do not know the answer to, that is okay! Be honest. Let the staff person know that you will find the information and get back to them in a follow-up email.
In the event that you are pressed about RLS patients taking opioids, or you feel that someone is questioning or delegitimizing your struggles with RLS, remain calm and respectful. This will be rare, but it is always good to be prepared. RLS is an underdiagnosed condition, and many people are unaware of its prevalence and severity. Remind the staff person that opioid medications are a last resort for patients suffering from RLS, and that guidelines are available for physicians to prescribe them appropriately. Ask that the staff person review the written materials in the leave-behind packet, which includes the clinical guidelines (“The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome”).
Conclusion. Thank the staff member for taking the time to meet with you. The staff member will most likely give you a business card, so be sure to hang onto it for future inquiries. Consider this a relationship-building activity, and plan to follow up with the office a few times a year moving forward. If you brought a camera or phone, ask if you can step outside the office to take a picture together in front of your legislator’s nameplate, to share with the Foundation or on social media. Have fun with it!

After the Meeting

You’ve met with your legislator’s staffer, educated them about RLS, and asked them to support the needs of RLS patients. Give yourself a pat on the back for a job well done!
Make a note in your calendar to follow up by phone or email within two weeks. You can thank the staff person again for meeting with you and provide any follow-up answers to questions. This would also be a great time to plug the Foundation's website at www.rls.org, or share a clip from the Foundation’s YouTube series, My RLS Journey. You can also contact Peter Herzog at herzog@hmcw.org for help with your follow-up messages.


To read more about the Foundation's advocacy efforts, accomplishments, and how you can get involved, visit www.rls.org.