Restless Legs Syndrome Foundation Blog

Dear Karla: How can joining the RLS Foundation benefit me in the future?

Curiously yours,
Ben with RLS

Great question, Ben! The work we do here today impacts our future good works supporting the RLS community.

One of the best ways you can manage your RLS is to become your own personal advocate. RLS Foundation membership equips you with the support and knowledge that allows you to stay ahead on cutting edge treatments leading to new diagnostic criteria, treatments to manage your disease and the only dedicated research program that seeks the causes and cures for RLS.

Nearly 20 years ago, I was a mom with an 11-year-old daughter who presented with a strange set of symptoms to the medical community. The diagnosis of RLS was missed by 9 doctors practicing in several specialty areas—she was ignored and told that she would just have to live with her condition. Thanks to Dr. Google, I found a name for the descriptive term she provided for the ailment afflicting her sleep each night. One night at 2 am, the RLS Foundation appeared in my search. As I poured through the pages of information, I found the name of the disease that stopped an 11-year-old dead in her tracks. If it were not for the committed members of this organization, I would not have found the name of the disease or a doctor knowledgeable in treating pediatric RLS. It wasn’t easy and we, as a family, live with the daily challenges of the disease. But for a kid who was failing out of school because of an undiagnosed sleep disorder, she graduated at the top of her class in college with a triple major because of the knowledge gained from the RLS Foundation’s scientific-based resources. I will be forever grateful to the members who made this possible to a mom on a quest for information.

Today, as Executive Director at the RLS Foundation, I am charged with creating and implementing actionable programs to increase our outreach. I marvel at the work of volunteers that serve on our Executive Board, Scientific and Medical Advisory Board, Support Group Leaders, Contacts and Discussion Board Moderators. Together, we work collectively to support, educate, advocate and conduct research that benefits every member of the RLS community.

A small committed group of individuals gathered around a dining room table in Raleigh, North Carolina in 1992; the same year that my daughter was born. The resolve and vision of these courageous individuals was clear – to create a Foundation to serve as the voice of our community. Who would have known that ten years later our family would need the Foundation and community of support.

As you can see, our community of caring and committed members raise the voice for RLS at the local, national and international level. Our volunteers serve as support group leaders, board members on NIH and DoD committees, and certified providers at Quality Care Centers in both the US and in Europe.

The power of membership is the key to advancing the needs of our community. I invite you to click here and take the same step that I did nearly twenty years ago.

Thank you for your question Ben. Becoming a member of the RLS Foundation will benefit you in the future because membership ensures the latest news and resources on the advances in RLS treatment which are published in NightWalkers and readily available for members like you. Plus your membership fee will support the only grant program specifically funding RLS research. In 2019 the RLS Foundation funded Doctor Sergi Ferré, PHD in exploring how opioid medications work in the brain to relieve RLS Symptoms. As a result we are actively seeking advancement in treatments on your behalf. Your membership also directly drives our advocacy efforts on Capitol Hill to educate providers, ensure medical research is governmentally funded and combat the opioid epidemic by providing a safe harbor in policy or legislation for RLS patients like you. Your membership preserves for you a community of support, access to new medical treatments and hope for a cure.

Building Momentum During the COVID-19

On April 24th, the RLS community celebrated the first Virtual RLS Advocacy Day with support and guidance from the Restless Legs Syndrome Foundation. Virtual RLS Advocacy Day provided individuals in the RLS community the opportunity to join together, as one, to educate our legislators about RLS and to ask for their support on key legislation of importance to our community from the comfort of their homes.

Our advocacy partner, the Health and Medicine Counsel of Washington (HMCW) presented a webinar led by Phil Goglas, Legislative Director on April 16th to educate and familiarize individuals in the RLS community about the advocacy process. He explained that Congress is currently making decisions for program spending in the next fiscal year. Our representatives rely on concerns voiced by their constituents to guide them in the legislative process.

The COVID-19 health crisis provided a unique opportunity for individuals to participate in RLS advocacy without the need to travel. This year, “Even with everything currently happening with COVID-19, 45 RLS advocates used their collective voices on behalf of the entire community to advocate for key priorities that would benefit all in the RLS community,” says Goglas. RLS advocates from 18 different states spoke out as a community and successfully contacted 105 legislators’ offices: 70 Senate and 35 House of Representatives. The calls to legislative staff along with emails sent by RLS constituents allowed our community to seek support for healthcare provider education, increased RLS research funding and appropriate access to opioid therapy for severe RLS.

Thank you Advocates

The RLS Foundation is incredibly proud of the RLS community’s participation. “The first Virtual RLS Advocacy Day was a resounding success. I thank every RLS advocate who reached out to their representatives during this difficult time to raise awareness and to educate legislators about RLS,” says Karla Dzienkowski, Executive Director of the RLS Foundation. The advocacy movement created by this virtual event educates our senators and representatives about RLS and how it impacts the lives of thousands of their constituents. “Your work as an RLS advocate is critical to making the case for RLS in federal funding in these program areas during the congressional appropriations process,” says Dzienkowski. The Foundation would like to thank all of you who took the time to share your personal RLS story with your representatives, to advocate for RLS legislation priorities and to share your interactions with your legislators with us. We will continue to monitor and report the outcomes from your advocacy outreach on Virtual RLS Advocacy Day.

How You Can Keep the Momentum Going

It’s never too late to get in touch with your legislators. Here’s what you need to know:

• Read our legislative and policy priorities to be informed about our current requests.
• Use the RLS prep packet for instructions on how to contact your representatives by phone or email. You’ll find phone call and email scripts to copy into your email – all you need to do is add your personal RLS story. Once you send emails or make phone calls please report back to us here.
• Share your story with us. Let us know how RLS impacts your daily quality of life and the importance of access to low total daily dose opioids for your treatment. With your permission, we will use your experience when speaking to legislators to illustrate the impact that RLS has on millions of Americans.
• The RLS Foundation’s advocacy efforts are made possible through gifts from generous supporters. To make a donation, visit www.rls.org or call 512-366-9109.

#VirtualRLSAdvocacyDay #RLSAdvocacy