A Guide to Navigating The RLS Foundation's Support Group Network

One of the most common questions we get at the Foundation is, "Where can I find support in my area?"

Across the U.S. and Canada, the RLS Foundation has a network of more than 75 individuals that serve as support volunteers for those suffering from RLS. Support group leaders organize meetings in their community to provide a safe haven for RLS sufferers to come together and share their stories, discuss coping strategies and learn about the latest treatments and information.

If there isn't a support group in your area, you can check to see if there is a contact nearby. Contacts are former group leaders who are available to offer support by phone or email to those in their area that are seeking RLS information, resources and support. They do not offer meetings but can assist in finding help where you live.

Another vital volunteer role with the RLS Foundation is our network of moderators who assist in managing the Foundation's discussion board. They are the virtual extension of our network that facilitates discussion and support regardless of your location or the time of day.

Check out the images below for a listing of our RLS Foundation volunteer family! You can also search for a support group or contact near you on our website.











We are always looking to expand our volunteer network, and to provide integral support and counsel to those in underserved areas. If you are interested in applying to become a support group leader, here are the steps:

1. Learn more about the role by viewing the support group leader description.  
2. Submit an application! 
3. The Foundation will send references a brief questionnaire.
4. Once reference questionnaires are returned, a volunteer manual is provided and a phone interview is scheduled.
5. You then plan your first meeting with the support from the Foundation!

Please send your completed application to:

Restless Legs Syndrome Foundation

Attn: Chiara Corey

3006 Bee Caves Road, Suite D206

Austin, Texas

78746

Or email Chiara@rls.org with your application form.

Our volunteer network is brimming with the enthusiasm of dedicated individuals - They continue to help The Foundation spread awareness and provide support to those facing RLS. Attend a support group meeting in your area or start one yourself! We want you to be a part of our team!

Who We Are and What We Do

In 2017, the RLS Foundation will celebrate its 25th birthday!

This year alone, we have certified three Quality Care Centers, created a multidisciplinary Scientific and Medical Advisory Board, developed an RLS Children's Booklet (copies available soon!), undergone a massive website redesign (to be unveiled next month!), and reinvigorated our research grant program that awards up to eight new pilot grants totaling $200,000. And it's barely August!

We invite you to join us!

Our community is growing... learn how the Foundation can help you find the medical and social support you may need. After all, we are here to serve you!

Meet Karla Dzienkowski, RN, BSN:

Executive Director

In January 2014, Karla accepted the position of executive director. In two and a half short years she has made a huge impact on this organization.

Karla first learned about RLS in her dual roles as a mother and registered nurse when her daughter, then 11 1/2 years old, began to experience symptoms that doctors could not explain. Karla crossed the country looking for answers before finally finding a knowledgeable doctor, and shortly after, the RLS Foundation.

Eager for answers, Karla joined the Foundation’s Board of Directors in 2004 and served through 2009. As a board member, she encouraged pediatric RLS research, along with programs to increase awareness and education of RLS in the medical and school communities. Karla believes that much work has yet to be done in disseminating information about RLS to the public and the medical community, and that much more research into its cause and treatment is needed. Karla drives the mission of the Foundation with her leadership, and she is passionate about promoting research for better treatments and a cure.

Karla explains “The RLS Foundation serves as a beacon of hope, help and support for individuals and their families who deal with the daily impact that RLS has on their life. I want to thank each of our members for supporting the Foundation because you gave me and my family a life-line when we desperately needed one. With the help of the Foundation we were able to find the care my daughter needed and get back to living life.”

Karla has vast experience working with non-profits, including active participation for many years in Girl Scouts, Austin Children's Museum and three years serving on the Board of Directors for National Charity League, Inc., with one year as board president of the Capital of Texas Chapter. Karla, her husband, John, and their two daughters have recently welcomed a new Alaskan Klee-Kai puppy named Arrow into the family.

Karla is truly the Foundation’s #1 cheerleader. She always responds to difficult inquiries that come to the Foundation with genuine empathy, support and deep knowledge of RLS, drawn from her roles both as a family member impacted by the disease and as a nurse with over 30 years of medical knowledge and experience.

We recently received this note to Karla from someone with whom she was corresponding: “I also thank you for the empathetic warmth of your email. As you know, people in my situation feel very stressed and suffer from social isolation. It means a lot to feel contact with someone who understands. I think your organization is very blessed to have someone like you working in your position. I hope they appreciate you!”

Do we appreciate Karla? … Beyond measure!

• Recognition of RLS Quality Care Centers as leaders in the field and as specialty clinics for patients who are traveling or in search of knowledgeable healthcare providers
• Availability of RLS Quality Care Center staff as resources for referring primary care providers
• Patient educational offerings, print materials and connection with RLS Foundation local support groups

                  

PRESS RELEASE, May 18, 2016
Drug Used for Pain, Anxiety May Be Linked to Birth Defects

MINNEAPOLIS – A drug commonly used to treat pain, epilepsy, anxiety and other brain health disorders may be associated with an increased risk of major birth defects, according to a study published in the May 18, 2016, online issue of Neurology®, the medical journal of the American Academy of Neurology.

The drug pregabalin is approved by the FDA to treat epilepsy, fibromyalgia and neuropathic pain, such as pain from diabetic neuropathy or pain after shingles or spinal cord injury. It is also used for generalized anxiety disorder and other mental health issues. This is called off-label prescribing.

For the study, information was collected in seven countries from 164 women who took pregabalin during a pregnancy and 656 pregnant women who were not taking any anti-seizure drugs. The women or their practitioners were then contacted again after their expected date of delivery. 

Pregnancies of the women who took pregabalin during the first trimester of pregnancy were three times more likely to result in major birth defects than those of the women who did not take anti-seizure drugs. Seven of the 116 pregnancies in women taking anti-seizure drugs, or 6 percent, had major birth defects, compared to 12 of 580 pregnancies, or 2 percent, in women who did not take the drug. Birth defects due to chromosomal abnormalities were not included in these results.

The major birth defects included heart defects and structural problems with the central nervous system (CNS) or other organs. The women taking pregabalin were six times more likely to have a pregnancy with a major defect in the central nervous system than women who were not taking the drug, with four CNS defects out of 125 pregnancies, or 3.2 percent, compared to three CNS defects out of 570 pregnancies, or 0.5 percent.

Of the women taking pregabalin, 115 were taking it to treat neuropathic pain, 39 were taking it for psychiatric disorders, including depression, anxiety, bipolar disorder and psychosis, five were taking it for epilepsy and one was taking it for restless leg syndrome.

A total of 77 percent of the women started taking pregabalin before they became pregnant. The women in the study stopped taking the drug at an average of six weeks into their pregnancies. Of the women taking pregabalin, 22, or 13 percent, were also taking another anti-seizure drug.

“We can’t draw any definitive conclusions from this study, since many of the women were taking other drugs that could have played a role in the birth defects and because the study was small and the results need to be confirmed with larger studies, but these results do signal that there may be an increased risk for major birth defects after taking pregabalin during the first trimester of pregnancy,” said study author Ursula Winterfeld, PhD, of the Swiss Teratogen Information Service and Lausanne University Hospital in Lausanne, Switzerland.

Winterfeld said, “Pregabalin should be prescribed for women of child-bearing age only after making sure that the benefits of the drug outweigh the risks and after counseling them about using effective birth control. In cases where women have taken pregabalin during pregnancy, extra fetal monitoring may be warranted.”

To learn more about brain health, please visit http://www.aan.com/patients.

The American Academy of Neurology, an association of 30,000 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, stroke, migraine, multiple sclerosis, concussion, Parkinson’s disease and epilepsy. For more information about the American Academy of Neurology, visit http://www.aan.com or find us on Facebook, Twitter, Google+ and YouTube.

Use of IV Iron with Ferric Carboxy Maltose (Injectafer) for Treating RLS

• Recognition of Quality Care Centers as leaders in the field and as specialty clinics for patients who are traveling or in search of knowledgeable healthcare providers
•  Availability of Quality Care Center staff as resources for referring primary care providers
•  Patient educational offerings, print materials and connection with RLS Foundation local support groups