Restless Legs Syndrome Foundation Blog

Recognizing RLS Awareness Day on September 23

RLS Awareness Day is recognized annually every September 23 – and this year, we are recognizing it all week!

Restless legs syndrome is a serious neurological disorder that affects 10 million adults and 1.5 million children. The lack of awareness surrounding this disease means that many face lengthy delays in receiving an RLS diagnosis, receiving adequate treatment or finding a community of support who understands the impact of RLS on daily life. Each day this week, we will have a new way you can raise awareness through one of five focuses: awareness, education, research, advocacy, and building a community of support.

We encourage members of the global RLS community to take part in recognizing this important day by following us on social media, sharing our posts, taking part in our Awareness Day activities, and lending your voice to help amplify the visibility of RLS throughout the medical and public spheres.

Throughout this week, take part in one or all of our special focuses on Facebook, Instagram, X.com and LinkedIn by engaging or sharing your own personal journey using the tag #MyRLSStory.

Monday, September 23

Raising Awareness

Share one thing you wish everyone knew about RLS by responding to our posts on Facebook or Instagram!

Tuesday, September 24

Education

Refresh your RLS knowledge by viewing a video from Dr. Lourdes DelRosso, a sleep physician and professor at UCSF, and RLS expert on the intricacies of RLS in pediatrics. Stay tuned on our socials to access the recording!

Wednesday, September 25

Research

The RLS Foundation Research Grant Program has funded 50 grants, totaling nearly $2 million, in its mission to fund research that helps us gain a better understanding of the disease, improve treatments, and ultimately, to find a cure.

This year, we are excited to announce the funding of four research grants – all of which uniquely drive forward our mission! Be sure to follow us on Facebook and Instagram, so you can share this exciting news with your family and friends.

Thursday, September 26

Advocacy

There are many forms of advocacy – self advocacy as a patient, advocating for the needs of your community through legislative action, advocating for a support system, and advocating for awareness in the medical community. Learn how the Foundation supports advocacy on our socials!

Friday, September 27

Community of Support

Comment a phrase or message of hope across the RLS Foundation’s social platforms and let your fellow RLS community members know that they are not alone and there are people who understand and empathize with their experiences.

Happy RLS Awareness Day!

Thank You for all your support!

RLS Awareness Day on Sept. 23, 2018 was a great success! At the Foundation, all of our social media channels were flooded with the hashtag #MakeADifference4RLS. Photos poured in from across the country of people holding the latest NightWalkers magazine cover with its eye-catching RLS awareness graphic. We invite you to view these images in the Awareness Day 2018 photo album on the Foundation’s Facebook page. Here is a staff favorite!

Many members of the RLS community acted on our “10 Ways to Raise Awareness” list, while some created ways of their own to spread RLS awareness. The Foundation emailed an Awareness Day media packet to support group leaders that included a press release, media talking points, public service announcement and RLS fact sheet. One of our long-time volunteer support group leaders, Mary Lou Mennona, emailed our press release to a number of Florida newspapers to spread the word about RLS. The chair of our Board of Directors, Lew Phelps, shared RLS information and resources through a neighborhood social networking channel. The child of a Foundation member wrote a report about RLS for school and shared a photo of himself holding NightWalkers magazine on Facebook. These are just a few of the many ways our community banded together to educate others about how RLS is a serious but treatable condition. Thank you to all who participated!

Awareness and education are so important. At least 10 million people in the US have RLS, yet only about 5,000 have joined the RLS Foundation as members. It is our hope that by spreading awareness during September – and throughout the year – we can reach people who don’t yet know about the Foundation, and offer them the information and support they need.

Although Awareness Day has passed, each of us can do our part and continue to spread the word: You are not alone! Help is available for those with even the most severe cases of RLS, which includes those experiencing augmentation. And the RLS Foundation offers hope, through programs to raise awareness, improve treatments, and fund research to find a cure. Learn more at www.rls.org.

Ten Ways to Raise RLS Awareness During September

RLS is still not widely understood and awareness remains one of our primary goals at the RLS Foundation. With your help, we hope to spread awareness about what RLS is, and to let the public know that information and support are available through the RLS Foundation and our volunteer support network.

This year we are launching our #MakeADifference4RLS challenge. On the cover of the Summer 2018 edition of NightWalkers is our Awareness Day image and we encourage you to take part in the challenge. To participate, take a picture of you and the cover of NightWalkers doing an activity to spread awareness and email it to clara@rls.org. If you do so before September 23, you will receive a FREE RLS awareness magnet!

Here are some suggestions to get you started, we look forward to hearing what YOU do to get the word out!

1. Take a selfie or make a short video clip with your own RLS awareness message. Post it on Facebook, Twitter, YouTube or Instagram – and ask your kids, grandkids and friends to do the same! Use the hashtags #MakeADifference4RLS.
2. Write a letter to the editor of your local newspaper or TV station about your experience with RLS. You can also be a guest blogger for the RLS Foundation – email info@rls.org to learn more.
3. Share our YouTube videoswith your local newspaper, radio and TV media.
4. Show your support! Whether an RLS Foundation T-shirt, an RLS magnet on your car, or a hand- written “RLS Awareness Day” sign, you can catch eyes and start conversations to help spread the word. For more ideas, visit www.rls.org/shop to access the RLS Foundation’s online store - Everything is 25% off during September!
5. Share copies of Nightwalkers with your local library, doctor’s office, assisted living facility, church or other community gathering place.
6. Ask a friend or family member to join you in watching a free RLS Foundation webinar – visit the Member Portal on www.rls.org to access our webinar library.
7. Make the RLS Awareness Day image your Facebook profile picture.
8. Give the gift of an RLS Foundation membership to family, friends and your physician or “pay it forward” by donating a scholarship membership to someone needing assistance with membership, visit www.rls.org/pay-it-forward or call 512-366-9109.
9. Share what you are doing on Awareness Day with a post to Facebook tagged #MakeADifference4RLS.
10. Share information about our upcoming RLS physician webinar series beginning in October 2018 with your healthcare providers – refer them to www.rls.org/PhysicianEd.

Thank you to everyone who has participated in RLS Awareness Day activities so far - let's get creative and let's get going!