Restless Legs Syndrome Foundation Blog

4-Star Rating from Charity Navigator

Wednesday, December 27, 2017

RLS Foundation Earns Coveted 4-Star Rating from Charity Navigator Austin, Texas, Dec. 22, 2017 – The RLS Foundation’s strong financial health and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America’s largest independent charity evaluator. Since 2002, using objective analysis, Charity Navigator has awarded only the most fiscally responsible organizations a 4-star...

Spotlight: Steven McCann

Wednesday, December 27, 2017

New Member Joins RLS Foundation Board of Directors We are pleased to welcome a new member to the RLS Foundation's Board of Directors, Steven McCann! "Introducing Steve is my particular privilege, and the phrase that keeps coming to mind to describe him is the paradoxical ‘servant-leader,’" said Linda Secretan, RLS Foundation support group leader, fellow board member and...

How to "Pay It Forward" This Holiday Season

Thursday, December 14, 2017

Guest Blogger: Jim Healey, Part 2

Monday, December 11, 2017

RLS: A Real Lousy Syndrome, Part 2 A Poem by Jim Healey Two months ago, I wrote a poem About my battle with RLS. I emphasized my lost sleep, But now that loss is much less. Things have changed a lot since then, At shows, I'm not standing in the back. On airplanes now, I can stay in...

Pilot Study on Opioid Use Seeks Volunteers

Monday, December 04, 2017

Foundation-Funded RLS Study Hits the Ground Running In May 2017, John Winkelman, MD, PhD, of Harvard Medical School was awarded a two-year RLS Foundation grant for $144,000 to produce a pilot study on the use of opioids to treat restless legs syndrome. His study, “Multi-center Longitudinal Pilot Observational Study of Efficacy and Tolerability of Long-term Treatment of Restless...

New Genes Associated with RLS

Monday, November 20, 2017

New Genes Discovered that Contribute to Risk of RLS Last month, researchers reported the identification of thirteen new gene loci that increase the risk for developing restless legs syndrome. This is a major milestone in demonstrating the power of genomics and its capacity to locate genes responsible for certain diseases. It has long been known that RLS runs...

Giving Thanks

Friday, November 10, 2017

Thank You from Our Executive Director As we plan for the season of giving thanks and gathering with family and friends, I want to be the first to thank each of you for your loyal support to the RLS Foundation. Your gifts have allowed a once tiny organization of a committed group of volunteers to grow and become...

Spotlight: Carla Rahn Phillips, PhD

Wednesday, November 01, 2017

Foundation Welcomes Third New Board Member in 2017 We are pleased to welcome a brand new member to the RLS Foundation's Board of Directors, Carla Rahn Phillips, PhD! Dr. Phillips was born in Los Angeles, California. She earned her B.A. in History at nearby Pomona College in Claremont and her Master’s and Ph.D. degrees at New York University....

Spotlight: Donna Rivers

Wednesday, October 25, 2017

New Support Group Leader in Portland, OR The Foundation is pleased to welcome Donna Rivers as the new support group leader in Portland, Oregon. Thank you, Donna, and welcome! “My desire to become a support group leader for the RLS Foundation is directly related to my personal struggle with the disease. During my longstanding battle with RLS, I...

Foundation-Funded Study Reveals Economic Impact of RLS

Friday, October 20, 2017

October 20, 2017 RLS Training for Doctors Would Be Cost Effective, Study Shows By Kris Schanilec An excerpt from the spring 2017 edition of NightWalkers, the Foundation's quarterly magazine Recent research findings make the case for investment in a longterm infrastructure to train primary care providers in the United States to recognize and treat RLS. Currently, doctors do...

Southwest Ohio Volunteer Update

Friday, October 13, 2017

Thank You, Jan! After over two decades of service, Janice Schneider is retiring as the support group leader for Southwest Ohio. She dedicated countless hours to her support group and others seeking help, and her passion for providing support to those suffering was unparalleled. Jan will be staying on with the Foundation as a volunteer contact, so she...

RLS + Quinine Update

Friday, October 06, 2017

Quinine Treatment for RLS or Leg Cramps is Associated with Increased Mortality By Lynn Marie Trotti, MD, MSc An excerpt from the Summer 2017 edition of NightWalkers, the Foundation's quarterly magazine “Association Between Long-Term Quinine Exposure and All-Cause Mortality.” Fardet L, et al. JAMA, May 2017. The Background: Nocturnal leg cramps are common, affecting over one-third of adults...

Spotlight: Dr. Shalini Paruthi

Wednesday, October 04, 2017

RLS Foundation Welcomes New Board Member We are pleased to welcome a brand new member to the RLS Foundation's Board of Directors, Shalini Paruthi, MD! She is an energetic practitioner and scientist with a unique perspective on sleep medicine. Dr. Paruthi practices in St. Louis, MO, where she sees patients of all ages. She has a particular interest...

RLS Awareness Day 2017 Thank You

Tuesday, September 26, 2017

Thank You! RLS Awareness Day 2017 was one of our most successful awareness campaigns yet. Hundreds of you donated, shared your RLS stories with us and your communities, and echoed to others that they are not alone. Not to mention that we made our $25K "Challenge for the Cure" match! Some well-deserved thanks are in order for RLS...

Guest Blogger: Jim Healey

Wednesday, September 20, 2017

RLS: A Real Lousy Syndrome A Poem by Jim Healey If you're a victim of RLS I know you'll connect with this rhyme. Some say the darn thing's a bother I say the darn thing's a crime. My mother had legs that misbehaved She never knew what was wrong. “It's like little men with knives,” she said “Tormenting...

What You Can Do for RLS Awareness Day 2017

Thursday, September 14, 2017

Ten Ways to Become an RLS Awareness Ambassador On Saturday, September 23, the RLS Foundation will join communities across the globe to celebrate RLS Awareness Day 2017. Held on the birth date of Professor Karl-Axel Ekbom, the Swedish neurologist who first described restless legs syndrome in 1945, Awareness Day is an opportunity to share key information about RLS...

Guest Blogger: Susan Schlichting

Friday, September 08, 2017

My SIBO Story Do certain foods seem to trigger your RLS? Or, when you experience bloating or abdominal fullness, do these conditions seem to exacerbate your RLS? If so, read on. I finally made the connection between my restless legs and many years of (undiagnosed) Irritable Bowel Syndrome (IBS). I heard from Caroline Chamales, the RLS Foundation support...

New RLSF Research Grant on Opioids

Tuesday, September 05, 2017

Foundation Funds Study on Use of Opioids for RLS An excerpt from the Summer 2017 edition of NightWalkers, the Foundation's quarterly magazine The RLS Foundation has awarded a $144,000 grant to John Winkelman, MD, PhD, of Harvard Medical School, for a pilot study on the use of opioids to treat RLS. The two-year project is part of broader...

Guest Blogger: Thomas Thoreen

Friday, August 18, 2017

Finding Hope I’ve tried to describe emotional aspects of having severe or refractory RLS. The word “refractory” in medicine means “not treatable” or “resistant to treatment.” Those of us in this RLS category have horrible symptoms at any time of day OR night. The symptoms and pain will disturb any facet of daily living. RLS does not discriminate....

Back to School with RLS

Friday, August 11, 2017

How to Manage Your Child's RLS in the Coming School Year Restless legs syndrome (RLS) does not only affect adults. In the United States alone, RLS is believed to afflict an estimated 1.5 million children and adolescents. Although most research has focused on adults, RLS symptoms often begin during childhood or adolescence. In fact, about 35 percent of...

Spotlight: Dr. Mauro Manconi

Wednesday, August 09, 2017

Providing RLS Care in Southern Switzerland Mauro Manconi, MD, PhD, a current member of the Foundation's Scientific and Medical Advisory Board, has devoted much of his career to sleep medicine. In 2016 he partnered with the RLS Foundation as director of the second European RLS Quality Care Center (QCC), the Sleep Center at the Neurocenter of Southern Switzerland....

Iron + RLS

Friday, August 04, 2017

What You Need to Know Iron deficiency without anemia has been associated with increased fatigue, depression, cognitive impairment, decreased work capacity and restless legs syndrome (RLS). Prior to diagnosis, an RLS healthcare provider may check a patient's iron (ferritin) levels to see if they have low iron. "Keeping iron levels mid-range (75mcg/L and above) correlates to RLS symptom...

Spotlight: Dr. Jacci Bainbridge

Wednesday, July 05, 2017

Board Member and Longtime Friend of the Foundation Jacci Bainbridge, PharmD, FCCP, a current member of the Foundation's Board of Directors, has a long history with the RLS Foundation. Beginning in 2007, Dr. Bainbridge served on the BOD for eight years. After a two year hiatus, she returned to the board in 2017. "I have a vested interest...