Restless Legs Syndrome Foundation Blog

May 1, 2020

Building Momentum During the COVID-19

On April 24th, the RLS community celebrated the first Virtual RLS Advocacy Day with support and guidance from the Restless Legs Syndrome Foundation. Virtual RLS Advocacy Day provided individuals in the RLS community the opportunity to join together, as one, to educate our legislators about RLS and to ask for their support on key legislation of importance to our community from the comfort of their homes.

Our advocacy partner, the Health and Medicine Counsel of Washington (HMCW) presented a webinar led by Phil Goglas, Legislative Director on April 16th to educate and familiarize individuals in the RLS community about the advocacy process. He explained that Congress is currently making decisions for program spending in the next fiscal year. Our representatives rely on concerns voiced by their constituents to guide them in the legislative process.

The COVID-19 health crisis provided a unique opportunity for individuals to participate in RLS advocacy without the need to travel. This year, “Even with everything currently happening with COVID-19, 45 RLS advocates used their collective voices on behalf of the entire community to advocate for key priorities that would benefit all in the RLS community,” says Goglas. RLS advocates from 18 different states spoke out as a community and successfully contacted 105 legislators’ offices: 70 Senate and 35 House of Representatives. The calls to legislative staff along with emails sent by RLS constituents allowed our community to seek support for healthcare provider education, increased RLS research funding and appropriate access to opioid therapy for severe RLS.

Thank you Advocates

The RLS Foundation is incredibly proud of the RLS community’s participation. “The first Virtual RLS Advocacy Day was a resounding success. I thank every RLS advocate who reached out to their representatives during this difficult time to raise awareness and to educate legislators about RLS,” says Karla Dzienkowski, Executive Director of the RLS Foundation. The advocacy movement created by this virtual event educates our senators and representatives about RLS and how it impacts the lives of thousands of their constituents. “Your work as an RLS advocate is critical to making the case for RLS in federal funding in these program areas during the congressional appropriations process,” says Dzienkowski. The Foundation would like to thank all of you who took the time to share your personal RLS story with your representatives, to advocate for RLS legislation priorities and to share your interactions with your legislators with us. We will continue to monitor and report the outcomes from your advocacy outreach on Virtual RLS Advocacy Day.

How You Can Keep the Momentum Going

It’s never too late to get in touch with your legislators. Here’s what you need to know:

• Read our legislative and policy priorities to be informed about our current requests.
• Use the RLS prep packet for instructions on how to contact your representatives by phone or email. You’ll find phone call and email scripts to copy into your email – all you need to do is add your personal RLS story. Once you send emails or make phone calls please report back to us here.
• Share your story with us. Let us know how RLS impacts your daily quality of life and the importance of access to low total daily dose opioids for your treatment. With your permission, we will use your experience when speaking to legislators to illustrate the impact that RLS has on millions of Americans.
• The RLS Foundation’s advocacy efforts are made possible through gifts from generous supporters. To make a donation, visit www.rls.org or call 512-366-9109.

#VirtualRLSAdvocacyDay #RLSAdvocacy

April 21, 2020

Speaking Out During “Stay at Home” Orders

COVID-19 may keep us apart, but we can all stand together to let Congress know that nearly 12 million Americans live with RLS and we must be heard. Our original plans for RLS advocates to travel to Washington, DC for “RLS Hill Day” have changed due to “stay at home” orders.

This unique situation provides each of us in the RLS community the opportunity to participate in this day of virtual advocacy by calling or emailing our representatives to educate them about RLS and to ask for their support in specific policies and legislation. We’re calling it Virtual RLS Advocacy Day and we are looking for anyone with RLS, and anyone who loves and cares for someone with RLS, to join in this campaign on Friday, April 24th, to let lawmakers know what the RLS community needs in order to manage this misunderstood disease.

What Makes this Day Different?

The RLS Foundation has partnered with the Health and Medicine Counsel of Washington (HMCW) for over three years to coordinate and direct our advocacy efforts. Working together, we have coordinated multiple trips to Washington DC to meet with key legislators in person to discuss our concerns and ask for their support in specific legislation and policy. What we have learned is that your representative wants to hear YOUR story. You can make a difference. You, the constituent, must reach out to your representatives with your personal RLS story and let them know how they can effect change in your life with our priority legislation.

What are the Priorities

We have narrowed down our requests to the following four areas currently under consideration in Congress. We all need to ask our representatives to support these initiatives on our behalf:

• Increase funding at the National Institutes of Health—$44.7 billion in the FY 2021 Labor-HHS-Education Appropriations bill to fund critical research to find treatments and a cure for RLS.
• Continue to include “sleep disorders” as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) in the FY 2021 Defense Appropriations Bill.
• Protect the needs of RLS patients who depend on appropriate access to low-total daily dose opioid therapy to manage the most severe forms of the disease when all other treatment options have proved ineffective. Ensure that RLS patients retain access to physician-directed care and treatment using opioids in any legislation, policy or regulations.
• Support provider education to minimize misdiagnosis and incorrect treatment of this misunderstood disease. The CDC’s National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) supports several programs that work to increase public awareness and improve professional education. Please provide $5 million for the National Neurological Conditions Surveillance System (NNCSS) and $5 million for a Chronic Diseases Education and Awareness Program.

Why Contact your Representatives?

Hearing from constituents can make a powerful difference in how legislators view and vote on issues. Making a phone call or sending an email allows you to tell your RLS story. When you explain how RLS affects your everyday life—impacts your job, curbs your ability to travel, makes it impossible to get a full night’s sleep—you put a face on this misunderstood disease and gain support from our lawmakers.

How YOU Can Make a Difference

We want this to be as easy as possible for everyone to join us on this first Virtual RLS Advocacy Day on Friday, April 24. We have gathered all the information you need to make phone calls or send emails, or both!

• Before Friday, download the Prep packet from the Advocacy page on our website (www.rls.org). There you will find instructions on how to contact your members of Congress. We have provided an email template and a call script – you simply add your personal RLS story.
• Watch the recorded webinar “How to Prepare: Virtual RLS Advocacy Day” or download the webinar slides to find out what you need to know before you make your calls or send emails.
• Read the RLS Foundation’s legislative priorities if you want more details on each issue.
• If you prefer to make phone calls, you will likely be directed to the staffer that handles health issues (Health Legislative Assistant or HLA). We have a partial list of the HLAs in the Prep packet. Check to see if your member of Congress is listed for their phone number and HLA.
• Finally, after you have completed your calls or emails, please let us know who you contacted and if they requested additional information so that the Foundation can follow up with this request. It helps to know which members of Congress have been contacted to determine the effectiveness of this campaign and to identify potential RLS champions in Congress. Complete this short survey after your contacts.
• If you have any questions before or during Virtual RLS Advocacy Day please give us a call at 512.366.9109 or email amber@rls.org.