Restless Legs Syndrome Foundation Blog

Congress Recognizing RLS Awareness Day - September 23rd

Thursday, September 19, 2019

SPOTLIGHT: Marcia Ball and Dr. Ronald Anderson

Tuesday, September 17, 2019

September 17, 2019

Dr. Ronald Anderson and Marcia Ball Join Board of Directors

The RLS Foundation is pleased to announce two new members of the Board of Directors. Both have been long time supporters and members of the Foundation and now will be donating their time and talent to help propel the Foundation into 2020.

Linda Secretan, Secretary and Chairman of the RLS Foundation Nomination Committee explains, “Last September at the RLS Patient Symposium hosted by the RLS Foundation in La Jolla, we had an opportunity to meet many faithful Foundation members. It was a pure pleasure for your board members to meet so many for whom our shared mission and vision resonates. Marcia Ball and Dr. Ron Anderson were two of those enthusiastic members who expressed interest in how they might carry forward the effort on behalf of all of us, our families, and friends who are suffering from this increasingly well-known disease. Each brings a singular perspective and unique talents to the effort; we are grateful to them for joining the team!”

Ronald E. Anderson, PhD

Ronald E. Anderson, PhD was born in Sikeston, Missouri in 1941, but grew up in Addis Ababa, Ethiopia from 1944-1953. He received his Bachelor’s Degree in psychology from La Sierra University and his PhD in sociology from Stanford University. He went on to become a professor of sociology at the University of Minnesota and continued to teach for nearly four decades. As an academic, his early work focused on social and institutional factors as they relate to the development of technology-based teaching. His interdisciplinary work in sociology, educational research, and computer science has earned him honors and awards for outstanding service from the American Sociological Association, the American Educational Research Association, and the Association for Computing Machinery.

Dr. Anderson is now an emeritus professor of sociology and is the founder of the Foundation for the Relief of Suffering. Since retiring, compassion and human suffering have been his primary interest. This led to the discovery of indicators of compassion and caring in society and the development of Good Societies Index. Anderson has authored numerous scholarly articles and books and continues with these pursuits. He hopes to contribute to the RLS Foundation by focusing on the suffering of those with RLS.

Anderson brings to the board his personal experience with RLS. Although he was diagnosed with RLS over 20 years ago, he suffered from augmentation and struggled to find a healthcare provider that met his needs. After contacting the RLS Foundation he was able to find a physician and receive the appropriate treatment for his RLS, which he states, “transformed my life by giving me freedom from pain and sleeplessness.” Anderson now wishes to give back to the RLS Foundation and the RLS community in return for the help that he received.

Marcia Ball

Marcia Ball was born and raised in Cleveland, Ohio. She received her Bachelor’s Degree in Elementary Education/Speech from Westminster College and her Master’s Degree in Early Childhood/Special Education from George Washington University. Ball spent her career as an elementary school teacher, taking on major projects such as redesigning and executing a New Resource Room at Walter Hays Elementary School in Palo Alto, California. Although teaching will always be her passion, she began volunteering after motherhood and has been a dedicated volunteer since—actively giving back to the Detroit community where she resides. In recognition for her work, she has been the recipient of several outstanding volunteer awards, including the Junior League of Detroit’s Adult Well Being Award, for her extraordinary service to the senior community.

Ball explains the impact of volunteering and what she calls the power of a cup of water: “Every person that walks into the front door of the hospital has something on their heart or mind, often a burden they cannot share. When offered a smile and a cold glass of water, I have offered them a very simple gesture which lets them know that someone cares about them. It can make the waiting in the ER seem tolerable, it can calm someone’s anxious spirit and it can soften the blow of hard news to another person. Yes, one cup of ice water is what I have to offer the RLS community. I can make a night seem shorter, calm one as they pace the floor because sleep won’t come, or stop the tears of one who is so frustrated with these legs that won’t stop. I can’t cure RLS, but I can offer a cold cup of water.”

After having RLS for over 30 years, and seeking care from a knowledgeable healthcare provider when her RLS was untreated for at least 10 years, Ball was particularly drawn to the Foundation’s mission to educate the medical community and the general population on RLS. She plans to use the lessons that she has learned from teaching and volunteering to serve the RLS community.

SPOTLIGHT: Jeffrey Durmer

Friday, September 13, 2019

We’re Making Progress: Let’s Keep Going

Thursday, September 12, 2019

September 12, 2019

A Letter to our RLS Foundation Supporters and the RLS Community

Thank you for your continued advocacy and support. In May, a delegation of RLS Foundation staﬀ, board members and over 20 patients attended the first RLS Advocacy Day on Capitol Hill in Washington, DC. Our team of advocates sat down with staﬀ of more than 45 legislative oﬃces to educate them about RLS, share the personal stories and struggles of many of their constituents, and outline our community’s unique policy considerations. This was our fourth round of meetings in DC since we launched our advocacy initiative in October 2017.

As a direct result of our advocates’ hard work educating their federal representatives, Congress continues to highlight RLS medical research at the National Institutes of Health through report language in annual appropriations bills. Emphasizing the importance of funding in this area will help to move research forward, create new treatment options for patients, and bring us closer to a cure. The Department of Defense also continues to pursue important research activities on sleep disorders. Thanks to our community and others, Congress continued to include sleep disorders as a category eligible for funding in fiscal year (FY) 2019, and we are working to ensure the category is included for FY 2020.

We are also happy to report the impact our advocacy campaign made on the Pain Management Best Practices Inter-Agency Task Force Report. Over 350 RLS patients and advocates submitted comments on the report, and the RLS community’s voice has been heard! Many of our concerns are reflected in the report, including an emphasis on the importance of clinical guidelines that are supported by evidence and created by organizations like the RLS Foundation that are experts in the treatment of certain conditions.

These recommendations underscore the importance of resources such as “The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome” published by members of the RLS Foundation Scientific and Medical Advisory Board. We encourage you to share these guidelines with your healthcare providers to educate them on appropriate treatment practices.

In conjunction with the Task Force’s report, the Centers for Disease Control and Prevention (CDC) has also acknowledged that its 2016 Guideline for Prescribing Opioids for Chronic Pain has been broadly misapplied, which has resulted in a loss of appropriate patient access and significant disruptions of care. The guideline is intended for primary care doctors managing individuals with chronic pain. While RLS is not a chronic pain condition, it’s important to note that the guideline has contributed to a loss of access for many RLS patients who take low total daily doses of opioids to appropriately manage their RLS.

In April, the CDC published a commentary in the New England Journal of Medicine outlining ways in which the guideline has been misapplied. For example, the guideline has been misapplied to unintended groups (such as RLS patients), as well as resulted in sudden discontinuation of opioid therapy – a practice that would be potentially devastating for someone with RLS. The CDC is also working to address these misapplications through improved educational resources for patients and providers.

These outcomes from the Task Force and the CDC are great steps in the right direction, but we need to keep pushing these issues forward. RLS patients across the country are still losing access to opioid therapy as a result of stigma, fear and miseducation.

Thank you again for your tireless advocacy on these issues, and your continued financial support. We will continue to update you on our progress to increase medical research, maintain patient access, and improve education and awareness.

We do this together, as always,

Karla Dzienkowski, RN, BSN	Christopher J. Earley, MB, BCh, PhD, FRCPI
Executive Director, RLS Foundation	Chair, RLS Foundation Scientific and Medical Advisory Board

Challenges with RLS in the Classroom

Wednesday, September 11, 2019

September 11, 2019

Back to School with RLS

By Kris Schanilec

As kids head back to school this fall, many will be facing a unique challenge. For children and adolescents with RLS (an estimated 1.5 million kids in the US alone), sitting still in a classroom can be very difficult. Like adults, kids with RLS tend to seek relief from their discomfort by moving their legs – for example, by fidgeting, stretching or changing position. Moreover, unlike adults, kids often complain of RLS sensations more during the day than at night. Add to this the effects of sleep deprivation on mood and attention, and RLS kids in the classroom can be in for a bumpy ride.

Teachers and other adults in schools need to be aware that RLS is a legitimate medical condition, and that your child needs support and accommodations. Here are some strategies to help ensure your child can manage his or her RLS to thrive at school.

Talk openly with family members about RLS.

Your child is struggling with a disease that is difficult to understand. By educating your whole family about RLS, you can help create a safe environment for your child to talk about symptoms and feelings. The Foundation has resources to help, such as the RLS Guide for Teens, an RLS children’s booklet (The Adventures of Patty Pillow), a patient handout and a healthcare provider brochure.

Talk with your child’s teacher.

Make an appointment to speak with your child’s teachers, school nurse and school counselor. These individuals can help you create an informal plan or a formalized plan (such as a Section 504 plan or Individualized Education Program) with accommodations that allow your child to manage RLS symptoms while at school and during school activities. For example, stretching or standing can help during classes; applying ice or heating pads may help when sitting for periods of time. You can also share handouts about RLS with the adults who will be supervising your child.

Establish a routine.

A solid bedtime routine will help your child fall asleep faster and stay asleep longer. Here are some good rules of thumb:

Go to bed and wake up at the same time every day.
Avoid large meals or snacks right before going to bed.
Turn off electronics at least two hours before bedtime and encourage quiet activities like reading a book (not on a tablet or phone) or taking a bath. Keep all electronics out of the bedroom.
Make sure your child gets plenty of fresh air and exercise to support a healthy sleep-wake cycle.
Remind your child to avoid common RLS triggers, such as caffeine, sugar, nicotine, alcohol, stress and extreme exercise. (Moderate exercise is best.)

Be assertive.

Finally, remember that while teachers and others at your child’s school may be juggling many priorities, at the end of the day, their No. 1 priority is the children in their care. They want and need to know if things are not going well, if accommodations in place are not working, or if your child reports any teasing or bullying. Don’t be afraid to speak up about your concerns. You are your child’s most important advocate – and your efforts may help another child with RLS in the future!

RLS Awareness Day - September 23rd

Tuesday, September 10, 2019