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.

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