Restless Legs Syndrome Foundation Blog

March 30, 2021

"Congressional Sign On Letter" for Sleep Disorder Research, Education and Awareness

Background

For the third year in a row, an official Congressional Sign On Letter will be sent to the Appropriations Committee asking them to prioritize support for sleep and sleep disorders research and awareness. To be effective, we need your member of the U.S. House of Representatives to "sign on."

Urgent Deadline Approaching

Your Congress Person will only join if YOU (the constituent) ask, and the final deadline is April 8. Take action TODAY, it is imperative! Here’s how:

1. Provide us with your name, address and email here. Include your Representative's name - go to www.house.gov and enter your zip code in "Lookup" to confirm your current member of House of Representatives.
2. Within 24 hours we will return text that you can copy and paste into an email (sample below) along with the email address for the staffer that handles healthcare for your district.
3. Insert staffer's email, cc: clara@rls.org and Press SEND!

Thank you for joining our RLS advocacy efforts by raising your voice for RLS, sleep and sleep disorders!

-----*SAMPLE PERSONALIZED REQUEST EMAIL*-----

To: [first.last]@mail.house.gov
Cc: clara@rls.org
Subject: Sign On Letter – Sleep Community

Dear [Staffer],

My name is [Your Name] and I am a constituent from [City, State]. I am also an advocate for the RLS and sleep disorders patient community. I hope your office will join the attached sign on letter, which supports the community’s appropriations recommendations for FY 2022. To join this letter, please contact Heather Connelly at heather.connelly@mail.house.gov by April 8.

Thank you for your time and for considering this request.

Sincerely,
[Your Name]
[Your Address]
[City, State Zip]

ATTACHMENT: FY22 Sleep Disorders DC and Sign on Letter

Act NOW! Send us your request by April 5!

Please submit your information now, you will receive a personalized email to send to the appropriate health staffer within 24 hours. All requests must arrive before April 5 to meet the email deadline of April 8.

March 5, 2021

Stefan Clemens, an East Carolina University (ECU) associate professor at the Brody School of Medicine’s Department of Physiology, was awarded a US patent for his novel method of treating restless legs syndrome (RLS), which could lead to more effective care over a longer period of time for patients.

RLS is frequently treated with dopaminergic drugs to replace or prevent the loss of dopamine. While these drugs can deliver a high initial effect, they often lose their effectiveness over time and symptoms can worsen, a side effect known as augmentation. Classic RLS treatments act on a dopamine receptor known as D3, which has a suppressive effect in the nervous system.

Clemens’ animal models show that over time the medication leads to an increase of a different, excitatory receptor subtype, D1. This increase of the D1 receptor might be the cause of augmentation. Clemens’ patent, which he received in late August 2020, targets the increased D1 receptor levels in RLS patients suffering from augmentation, leading to reduced activation of D1 receptors while providing traditional therapy relief from RLS.

“Our lab postulates that this new compound will maintain long-term efficacy for RLS,” Clemens said. “If augmentation begins, we predict that we can reduce D1 receptor activation in patients and balance things back out, keeping the treatment effective.”

Using a grant from the North Carolina Biotechnology Center, Clemens and a collaborator from the University of Houston will run a small pilot study of the new treatment method. His work also gained the attention of a company that has interest in establishing a partnership where ECU’s patent rights may be used in combination with its existing drug formulation for treating augmentation. “The patent would not have been issued without their help,” said Clemens, who is also working on medical treatments for opioid pain tolerance. “I now know that it can be very beneficial to have experts in other areas come from different angles that make us think of other ways to use our work.” Clemens is a member of the Foundation's Scientific and Medical Advisory Board and is the Chair of the Research Grant committee.