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!

RLS Foundation Partners with The American Academy of Sleep Medicine Foundation (AASM Foundation) to Fund Research

The American Academy of Sleep Medicine Foundation (AASM Foundation) is pleased to join forces with the Restless Legs Syndrome Foundation (RLS Foundation) to fund research leading to new treatments and a cure for restless legs syndrome (RLS).

Earlier this year, the AASM Foundation began an agreement with the Restless Legs Syndrome Foundation to co-fund basic and clinical RLS research. The partnership for 2024 includes the following research priorities:

• Neurobiological interaction: Elucidate the points of interaction between RLS-relevant neurotransmitters, neuronal pathways, and iron deficiency.
• Pharmacologic treatments: Elucidate effects of novel pharmacological approaches on RLS.
• Clinical Practice: research based on innovations in patient care delivery including but not limited to population health programs, technology-enabled healthcare delivery (i.e. Telemedicine) and public health initiatives.

The recipient selected for this joint award is Shawn Hochman, PhD, from Emory University School of Medicine on the topic: Sensory Dysfunction in a Diet-Induced Deficiency Mouse Model of RLS: Characterization and Control by Dopamine-Sensitive Spinal Gating Circuitry.

We are excited to continue this partnership with a new grant cycle that will open later this year.

About the AASM Foundation:

The AASM Foundation is the official philanthropy of the American Academy of Sleep Medicine. Our values, programs, and purpose are focused on investing in people, research, and communities to improve the sleep health of all people. Learn more about the AASM Foundation by visiting foundation.aasm.org.

Celebrating 10 Years of Dedication!

Ten years ago, Zibby Crawford joined the RLS Foundation as the Marketing and Communications Coordinator alongside newly appointed executive director Karla Dzienkowski. This powerful duo spent weeks traveling to the Foundation’s Rochester headquarters to learn the ropes from outgoing staff and move the foundation to Austin. Ten years later, we celebrate Zibby’s 10th Anniversary with the company and her unwavering dedication.

Every organization has one individual with a vast set of experiences that makes them a “jack of all trades.” If you were to look this up in the dictionary, you’d find Zibby’s name! She has covered many areas of responsibility, from being editor of NightWalkers to planning and coordinating webinars and conferences to overseeing the Foundation’s website. She has now taken on the Membership Coordinator role. It’s a good thing she is the ultimate multitasker!

Before the Foundation, Zibby worked in the high-tech industry but fell in love with the nonprofit sector when she served on the board of the National Charity League, Capital of Texas Chapter (where she met Karla). Zibby's warm and outgoing personality makes her a joy to work with. She always has a book recommendation at the ready! She shares her experience and makes herself available to teach a new skill or lend a hand. She has raised four kids, all still living in Austin, and is now “Gammie” to four grandchildren.

Zibby’s motto is “Spread joy!” and she carries that spirit with her each and every day.