Restless Legs Syndrome Foundation Blog

Dear WED/RLS Community, After 12 wonderful years at the Foundation, I have made the difficult decision to retire from my position as Executive Director at the end of the calendar year.  I will spend my final days transitioning out of my role and handing responsibilities to our very capable national office staff. The board of directors are in...

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Thank you to everyone that participated in the Give to the Max Day event. We exceeded our goal by $834! Individual Gifts = $10,834 Matching Gifts  = $10,000 Total Raised =     $20,834 Give to the Max Day 2013 is the best day to make the most of your charitable giving. From midnight to 11:59 p.m. on November 14th, every...

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Results from the “Patient Odyssey” SurveyOVERVIEWThe “Patient Odyssey” survey, conducted by the Willis-Ekbom Disease (WED) Foundation and sponsored by XenoPort, Inc., provides important new insights regarding the management of RLS/WED. The survey was designed to measure how RLS/WED impacts daily living, both from the perspective of patients as well as spouses/partners, including treatment considerations, emotional well-being, relationships and...

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-- Survey Reveals Significant Long-Term Challenges in RLS/WED Management -- Rochester, MN — Santa Clara, CA — November 13, 2013 —The Willis-Ekbom Disease (WED) Foundation and XenoPort, Inc. (Nasdaq: XNPT) announced today the preliminary results from the “Patient Odyssey” survey, which reveal the challenges experienced by patients with Restless Legs Syndrome/Willis-Ekbom Disease (RLS/WED). The survey kicked off during...

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Donna's Story I've suffered from WED/RLS my entire life - since I was a child. I was always being told to sit still, which of course I couldn't do. I'm 63 years old now, but when I was about 50 I finally couldn't take it anymore and my general practitioner referred me to a neurologist for treatment. I...

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The picture above shows the Alberta Treasury Branch's (ATB) presentation of the donation to the Canadian RLS Foundation. Left to right is Sharon Will, manager of the agency in our small Village, Michelle Payne, our son Trevor, myself Donna Payne and my husband Matt. In front are Trevor and Michelle's children, Marin and Riley.The bank manager Sharon chose...

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Growing Pains Last Tuesday, October 1st I had surgery on my left foot. I was given a mild sedative to make me sleepy and a local was used on the foot. After the surgery had begun the WED/RLS started and prevented the surgeon from proceeding until he could quiet the leg. After the procedure was complete and I...

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Specialists with expertise managing Willis-Ekbom disease (restless legs syndrome, or WED/RLS) are invited to apply for certification as WED/RLS Quality Care Centers. The Willis-Ekbom Disease (WED) Foundation (formerly RLS Foundation) is launching the Quality Care Center program to improve access to timely diagnosis and high-quality treatment for patients with WED/RLS. Certified Quality Care Center benefits: Recognition as leaders...

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To better serve its members, the Foundation will maintain a directory of healthcare providers who have expressed interest and/or knowledge in the treatment of WED/RLS by being certified as WED/RLS Quality Care Center provider.  We are proud to announce our third certified WED/RLS Quality Care Center! The University of Texas Health Science Center at Houston (UTHealth) 6410 Fannin...

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Growing Pains I was raised to regard family as truly important. When I was growing up we always spent Sunday at Grandma’s house visiting with aunts, uncles and assorted cousins. When someone asked how you were, they really wanted to know. I had horrible “growing pains” when I was little and I remember my Aunt Virginia massaging my...

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Rochester, MN – October 1, 2013—The Willis-Ekbom Disease (WED) Foundation is pleased to announce the launch of a new program designed to improve diagnosis and treatment for individuals living with Willis-Ekbom disease, also known as restless legs syndrome (RLS). The Foundation is developing a network of WED-RLS Quality Care Centers (QCC) that has highly developed expertise in diagnosis...

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Dear Friend, You have an opportunity to help us make even more of a difference for our Foundation.  Have you ever written an online review of a product or restaurant? GreatNonprofits.org – a review site like Zagats or TripAdvisor – is honoring highly-reviewed nonprofits with the 2013 Top-Rated List. Won’t you help us raise visibility for our work...

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FOR IMMEDIATE RELEASE: SHARE THE NEWS OF WILLIS-EKBOM DISEASE AWARENESS DAY 2013 ROCHESTER, MINNESOTA - SEPTEMBER 19, 2013 - Willis-Ekbom Disease (WED) Awareness Day will be celebrated on Monday, September 23, 2013 to educate the public about Willis-Ekbom disease (also known as restless legs syndrome-RLS) – a common neurological disorder that affects the lives of millions. This week is an...

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We’re trying to put together some ideas to help raise awareness of WED/RLS. Here are a few: Manicure or Pedicure for a Cure Get a manicure or pedicure that uses the colors of our logo: blue and yellow. You may want to incorporate the swirls or some lettering to your nails. CURE WED! or CURE RLS! Wear Slippers...

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I'm Jessica Roehm. I'm a 29 year old woman from the San Francisco Bay Area, plagued with WED/RLS. In the past year, my symptoms have gotten worse and it's lead me to reach out for help. After my general practitioner told me she had never referred patients with this disease to neurology, I realized there is not enough...

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RLS NEVER SLEEPS I sit awake late at night Thoughts are flying around my head My body and mind are so exhausted I only want to sleep in my bed My legs have their own agenda All different times, day and night But you can bet your precious farm My legs and I meet daily and fight I...

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To better serve its members, the Foundation will maintain a directory of healthcare providers who have expressed interest and/or knowledge in the treatment of WED/RLS by being certified as WED/RLS Quality Care Center provider. We are proud to announce our second certified WED/RLS Quality Care Center! Appointment Scheduling Information: Mayo Clinic Central Appointment Office 200 1st Street SW...

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The Foundation is putting together a Parent Advisory Board to develop and implement a new program (Hearing Children's Voices) to address the needs of children and youth living with WED/RLS, their families and their community schools and healthcare providers. Interested in joining? Please email crowson@willis-ekbom.org for more information. Thank you in advance for your time. ...

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To better serve its members, the Foundation will maintain a directory of healthcare providers who have expressed interest and/or knowledge in the treatment of WED/RLS by being certified as WED/RLS Quality Care Center provider.  We are proud to announce our first certified WED/RLS Quality Care Center! The Johns Hopkins Center for Restless Legs Syndrome 5501 Hopkins Bayview Circle...

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Rochester, Minn. – [August 1, 2013] – The WED/RLS Quality Care Center Program will establish a network of healthcare providers with expertise in diagnosis and disease management for people with Willis-Ekbom disease (restless legs syndrome, or WED/RLS), a chronic neurological disorder severely affecting about 3.9 percent of the population. This program is an initiative of the Willis-Ekbom Disease...

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I was diagnosed with WED/RLS when I was 20 years old. My doctor prescribed Mirapex. For several years, the prescription helped quite a bit.  Around a decade later, the Mirapex seemed to completely stop working. My RLS/WED was increasingly getting worse, year after year. After trying a myriad of medication combinations (which did not help), my doctor added...

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SLEEPS WHAT I MISS The silence so loud Just my thoughts in my head I’m beyond my exhaustion As I lay here in bed    My body so tired It just wants to give in To rest its weary bones When will sleep begin?  My legs hurt so badly You don’t understand It starts at my toes And...

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The Foundation is working with an artist to design monthly custom comics to educate individuals about the seriousness of WED/RLS and help increase awareness of the disease. The cartoon size will range from 1 to 4 panels each month and will be in full color. We are looking for ideas on what to name the cartoon series. Please...

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We received this digital image of a painting done by a new member years ago. He has WED/RLS. It reminds the Foundation of our logo. What do you think? Meaning behind the painting:This painting, like most of my work, was painted to show, (in a painterly style), the thought processes related to maturation in the infant and child...

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LEG PAIN My legs I just can’t bear it The pain is much too strong No matter what I do for it Everything seems to be wrong These pills, they don’t work for me I lay banging my legs all night The time I have relief if few Tears flowing, my bodies at fight No one knows the...

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Thank you to everyone that joined the Advances in Iron Treatment Webinar on Monday, June 10, 2013. We would also like to thank Dr. Connor and Dr. Earley for their wonderful presentation and for answering questions at the end.  The recording of the Webinar is no longer available. Please contact us at info@willis-ekbom.org about viewing the webinar. The slides...

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INSOMNIA Restless and thrashing All over our bed, Compelled to move, To turn, to rock, To wiggle and jiggle My arms and legs. I stretch and flex, Then roll and romp, A horizontal fast dance, Through half the night. The other half sleeps. I’m snoring and slurping, Wheezing and waltzing, Through dreams and spells Of abated breathing, then...

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In 2012, the Wed Foundation joined with a group of WED/RLS community scientists and patient groups to create an international awareness coalition. September 23, Dr. Karl Axel Ekbom’s birthday, is marked as WED/RLS Awareness Day around the globe. Events related to Awareness Day will be posted in the upcoming weeks. We hope you can join our awareness efforts....

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Youth Initiative Willis-Ekbom disease (WED), also known as restless legs syndrome or RLS, doesn't only affect adults. As this neurological condition has a genetic component, it can be hereditary. Some symptoms may arise early in life. It is on behalf of the youth living with WED/RLS we dedicate this this contest and the youth initiative web page. We...

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Anticipates Product in Pharmacies in Early June SANTA CLARA, Calif.--(BUSINESS WIRE)-- XenoPort, Inc. (Nasdaq: XNPT) announced today that shipments of Horizant® (gabapentin enacarbil) Extended-Release Tablets to its distributor in the United States have commenced. Depending on individual pharmacy ordering patterns, the product is anticipated to be generally available to patients in the first week of June. “We are...

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