RLS Advocacy: What We’ve Achieved in 2019

November 19, 2019

Great Progress for RLS

By Kris Schanilec

The RLS Foundation has made significant progress in advocating for the needs of RLS patients this year. Foundation leaders, staff and community members have worked in tandem to advance three goals:
1) increase RLS research,
 2) improve professional RLS education and public awareness, and
 3) ensure patients have continued access to low total daily dose opioid therapy for severe RLS.

Here are some highlights of 2019 achievements:

• Secured key congressional appropriations committee recommendations for the 2020 fiscal year that will support RLS research. – Congress continued to highlight RLS research at the National Institutes of Health through report language in its annual appropriations bills. – In September, the Senate Defense Appropriations committee once again included “sleep disorders” on the annual list of conditions eligible for funding through the Department of Defense (DOD) Peer-Reviewed Medical Research Program.
• Held the first RLS Advocacy Day on Capitol Hill in Washington on May 3. A team of 30 participants met with 45 congressional offices representing 16 states.
• Educated key legislators, agency officials, and policy makers through a grassroots base of RLS patients and a group of congressional champions both on and off the Hill.
• Mobilized 350 public comments from the RLS community on federal rulemaking regarding the opioid epidemic.
• Coordinated grassroots meetings with local congressional offices throughout the country during the August recess.
• Achieved congressional recognition of RLS Awareness Day on September 23.

“We launched the RLS advocacy initiative two years ago, and we’re making a difference,” says Karla Dzienkowski, executive director of the RLS Foundation. “Our efforts are moving the dial in terms of increased awareness and accommodation for the needs of RLS patients.

“Thank you to everyone who has met with their legislators, those who have participated in letter-writing campaigns, and all whose financial support makes this progress possible.”

How You Can Support RLS Advocacy

The RLS Foundation’s advocacy work is funded solely by gifts from generous individuals like you. Please consider supporting this important work with a donation to the RLS Advocacy Initiative.
Visit www.rls.org or call 512-366-9109. Thank you.