Restless Legs Syndrome Foundation Blog

September 23 is RLS Awareness Day!

This year we are celebrating RLS Awareness month by focusing on our advocacy program throughout September. We need your help to make sure everyone in Congress is #RLSAware. We’ve pulled together some ideas on how you can get involved to raise RLS awareness during September.

Here are the simple steps you'll take to get in touch with your representatives:

To find and contact your U.S. Senate Representative:

1. Visit the Senate website www.senate.gov
2. Conduct a search using the Find Your Senators pull-down menu in the upper right corner (select your state and click Go).
3. On the results page is a link to the Senator’s website, contact information, and links to an online contact form (forms vary by Senator).
4. To email: copy and paste your email script into the contact form found on their website, make edits and submit.
5. To call: choose an office location and follow the call script here.

To find and contact your U.S. House Representative:

1. Visit the House of Representatives website www.house.gov
2. Conduct a search using the Find Your Representative zip code search box in the upper right corner (enter your zip code and click Go).
3. On the results page is a photo of your Representative(s), links to the Representative’s personal website and online contact form, and a local map.
4. In the event your zip code overlaps with multiple congressional districts, the results page will include boxes for you to enter your zip code+4 or mailing address to find the correct Representative. If you need help finding your +4 zip code use the USPS Zip Code Lookup.
5. To email: copy and paste your email script into the contact form found on their website, make edits and submit.
6. To call: Look up Health Legislative Assistant (HLA) on partial list here and follow the call script here. If your HLA is not listed, call the office and ask to speak to the Health LA.

Keep an eye out for Foundation news and activities on our social media channels during September! And, after you contact your representatives please let us know here: https://www.surveymonkey.com/r/RLSAWARE

RLS Awareness Day: September 23, 2019

RLS Awareness Day is celebrated every September 23, and this year was a great success! RLS Foundation members and supporters from all over the globe participated in Awareness Day activities.

This year’s theme was #RLSAware. Throughout the day, the Foundation posted messages on social media to generate excitement and spread awareness. Each social media platform had a giveaway opportunity with three winners, and on Facebook, the Foundation’s Awareness Day image was shared 72 times! The Foundation also created a poster that was printed on the back of the Summer issue of NightWalkers and available for download at www.rls.org.

This Awareness Day included a special video message from an RLS champion: Bob Wise, who is a former governor of West Virginia. Governor Wise came to the Foundation this year looking for support. He found it at the RLS Foundation, and decided to step up and use his voice to raise awareness for the RLS community.

Another highlight was the passage of a resolution in Congress recognizing RLS Awareness Day. Steve Smith, one of the Foundation’s discussion board moderators, helped to arrange sponsorship of the resolution. Smith says that the Health and Medicine Counsel of Washington (HMCW), the RLS Foundation’s advocacy partner in DC, helped him make the request. “HMCW asked me to ask Congressman Tipton if he would be willing to sponsor a congressional resolution recognizing RLS Awareness Day; Congressman Tipton readily agreed. The resolution was read into the Congressional Record on September 18.” You can read his story on the RLS Foundation blog.

Across the globe in the Netherlands, a young woman named Lucy Hoekstra completed a 573-kilometer walking tour through three European countries in 23 days and ended her journey on September 23 in Denmark, spreading awareness about RLS through conversations and media interviews in towns she visited along the way. She literally walked for awareness! You can read more about her story at www.walkwithlucy.com.

Each year on RLS Awareness Day, the RLS community hopes to reach new people who don’t know that there is a name for what they are going through: a disease called restless legs syndrome. Approximately 10 million Americans suffer from RLS, and the RLS Foundation aims to help improve their lives by raising awareness, improving treatments, and through research, finding a cure for this disease. Thank you to everyone who participated in Awareness Day activities this year!

Although Awareness Day has passed, every day is awareness day for the RLS Foundation – and it can be for you too! Visit www.rls.org or contact the Foundation at info@rls.org to learn more.

HON. SCOTT R. TIPTON
of Colorado
in the House of Representatives

Congressional Record Vol. 165, No. 150

MR. TIPTON: Madam Speaker, I rise today on behalf of the millions of patients from across the country suffering from Restless Legs Syndrome, to raise awareness of this severely misunderstood neurological disease.

RLS is a serious neurological disease that devastates the lives of millions of Americans. An estimated 12 million men, women and children in the U.S. have RLS. Patients with RLS experience an overwhelming, agitating and uncontrollable urge to move their legs, which can only be relieved by moving or walking to abate the sensation. RLS is at its strongest in the evening and nighttime hours, severely disrupting sleep. Treatment is life-long, and there is no cure.

The sleep loss caused by RLS robs people of the ability to work and live normally and may lead to depression, anxiety and suicidal thoughts. Profound sleep loss also puts people with RLS at risk for hypertension, diabetes, heart attack, stroke and Alzheimer's disease.

I ask my colleagues to join me in working to raise awareness of this devastating disease by recognizing September 23rd as RLS Awareness Day.