Thursday, November 14, 2013

Give to the Max Day 2013

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 donation you make gives your favorite nonprofit or school the chance to win even more money.

The WED Foundation has secured two matching gifts for a total of $10,000. We need your donation to take advantage of the $10,000 in matching gifts!

Win a Golden Ticket! 
Golden Tickets are hourly drawings that add $1,000 to a person’s donation and randomly selected from donors who gave during each hour of the event. A donor to a nonprofit and a donor to a school will be randomly selected to have $1,000 added to their donations each hour. Additionally, two $10,000 Super-sized Golden Tickets will be randomly drawn at the end of the event—one for a nonprofit donor and one for a school donor!

Power Hours of Giving! 
Nonprofits and schools that raise the most money during each of five power hours will win a $1,000 prize grant. The organization from each leaderboard category (all nonprofits and schools, medium nonprofits, small nonprofits, and Greater Minnesota) and the school that raise the most from 2:00-2:59 a.m., 5:00-5:59 a.m., 5:00-5:59 p.m., 6:00-6:59 p.m., and 11:00-11:59 p.m. will each win a $1,000 prize grant, for a total of $5,000 in prize grants each power hour!

Give to the Max Donate Now Button

Until we find a cure,

Georgianna Bell, Executive Director
Willis-Ekbom Disease (WED) Foundation

Wednesday, November 13, 2013

Results from the “Patient Odyssey” Survey: Treatment Experience in WED/RLS

Results from the “Patient Odyssey” Survey

The “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 lifestyle. By assessing the findings, WED Foundation will be able to develop new tools to support patients, partners/spouses and physicians as they work together to achieve long-term disease management; the Foundation will also utilize the survey findings to help create greater understanding of RLS/WED among the general public.

The survey was sent to more than 3,000 members of the WED Foundation; members also received companion surveys to provide to their spouses/partners. More than 1600 adult patients (70% women; 30% men) and more than 670 adult spouses/partners (65% men; 35% women) responded to the survey, either online or by mail. The survey was fielded from October 7-November 8, 2013.

The following survey findings pertain specifically to treatment experience among patients. Findings related to emotional well-being, relationships and lifestyle, both among patients as well as spouses/partners, will be released in 2014.

Patient Profile
  • All patient respondents identified themselves as having been diagnosed with RLS/WED, either by a physician or through self-diagnosis, with the majority reporting diagnosis between 30-70 years of age (84%).
  • Almost one-third (35%) were diagnosed by a primary care physician, while another 39% were diagnosed by a neurologist and/or sleep specialist. 
  • Eighty-three percent (83%) started taking medication between the ages of 30 and 70, despite the fact that almost half (45%) began experiencing symptoms before age 30. 
  • Ninety-five percent (95%) of patients indicated they have taken prescription medication for their RLS/WED; of these patients, 97% were currently on prescription medication.
  • 73% of patients report experiencing their RLS/WED symptoms on a daily basis.
  • Sixty-one percent (61%) of patients report that their symptoms typically start in the afternoon or evening; however, 20% also report that the time that their symptoms start varies from day to day. 
  • In addition to prescription treatments, patients also reported taking iron supplements (43%), natural remedies (25%) and over-the-counter sleep aids (21%).
Prescription Treatment Experience
Note: the following statistics pertain to the 95% of patient survey respondents who reported they have taken prescription medication.

Symptom Control and Medication Switching
  • Only 6% of patients believed that their RLS/WED symptoms are completely controlled by their current medication(s).
  • About one-third (31%) of patients have switched medications three or more times since diagnosis.
  • Almost one-quarter (23%) of patients have tried five or more medications to treat their symptoms.
  • Patients reported lack of nighttime symptom control (46%), symptoms reappearing or getting worse after several months or years using a medication (33%), lack of daytime symptom control (24%) and experiencing unwanted side effects (23%) as the most common reasons for changing medication in the past.
  • Ninety-three percent (93%) of patients “agreed” that they wished more effective medications were available to treat RLS/WED.
  • Half (50%) report that they have been suffering with RLS/WED for a long time and nothing seems to work/adequately control their symptoms.
Side Effects
  • More than two-thirds (68%) of patients reported that they have experienced the side effect of augmentation (defined as a worsening of RLS/WED symptoms that occur after starting a prescription medication to treat RLS/WED. Particularly, symptoms may occur earlier in the day, spread to body parts other than the legs, be more intense, and/or begin after a shorter period of rest of inactivity than before treatment).
  • Sixty percent (60%) reported the side effect of augmentation to their physician, leading roughly one-third (32%) of patients to discontinue treatment and start a new medication while another 16% report that the dose or frequency of their medication was increased.
  • A little less than one quarter (22%) of patients have experienced withdrawal symptoms while discontinuing treatment.
Physician Knowledge of RLS/WED
  • Sixty-eight percent (68%) of patients “strongly agree” that there needs to be greater physician knowledge and understanding of RLS/WED.
  • Forty-two percent (42%) “agree” that their health care provider does not understand their disease.
  • About three-quarters (76%) “agree” that their doctor has prescribed the medication that is right for them.

WED Foundation and XenoPort Announce Preliminary Results from the “Patient Odyssey” Survey

-- 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 this year’s National RLS/WED Awareness Week, and examined treatment, lifestyle and emotional burden on both RLS/WED patients and their spouses/partners. Results regarding treatment burden are now available on the WED Foundation website (; results regarding lifestyle and emotional burden, including spouse/partner responses, will be released in 2014.

“This initiative has provided important insights regarding management of RLS/WED, including the fact that patients continue to struggle with identifying treatments that adequately control their symptoms in the long term,” said Georgianna Bell, executive director of the Willis-Ekbom Disease Foundation. “Most RLS/WED patients have the disease for life, so understanding how to navigate disease management considerations in partnership with loved ones and physicians is important. The results of this survey will allow us to develop new resources to facilitate improved outcomes for patients, as well as serve as an important educational tool that helps the greater public understand the serious burden of this disease.”

Participants of the survey included 1,709 RLS/WED patients who are members of the WED Foundation and consisted of 1,194 women and 515 men. The results of the survey showed:
  • Almost three in four (73%) of patients reported that they experience symptoms daily
  • When asked about their current medication, only 6% of patients believed that their RLS/WED symptoms are completely controlled by their current medication(s)
  • Sixty-eight percent of patients said they “strongly agreed” that there is a need for greater physician knowledge and understanding of RLS/WED
  • Forty-two percent of patients “agreed” that their healthcare provider does not understand their disease
  • Ninety-three percent of patients “agreed” that they wished more effective medications were available to treat RLS/WED
“The Patient Odyssey survey results mirror what I and many of my colleagues are already seeing in our practices – that patients can struggle for many years to identify the cause of their symptoms and to arrive at an appropriate disease management plan,” said Dr. Philip Becker, President, Sleep Medicine Associates of Texas and longtime member of the Medical Advisory Board of the WED Foundation. “This initiative reinforces the need to continue to educate the RLS/WED community and the physicians who treat them. Those with RLS/WED deserve knowledgeable physicians who understand the disease. A proper diagnosis and sustained treatment of RLS/WED can offer benefit to those who suffer through restless days and restless nights.”

The survey was conducted by the WED Foundation and made possible through a corporate sponsorship from XenoPort, Inc. It was distributed to members of the WED Foundation and their spouses/partners via mail and was available online throughout the month of October.

About Restless Legs Syndrome/Willis-Ekbom Disease
RLS/WED affects people of all ages, genders and races. People who have the disease have to move their legs or arms to relieve uncomfortable, sometimes painful sensations. These sensations tend to get worse when the person is at rest, like when sitting or lying down, watching television or taking a long car ride. Because symptoms usually intensify in the evening, they often interfere with the ability to sleep.

While the causes of RLS/WED are not completely understood, several genes have been identified with an increased risk of RLS/WED. Other factors thought to contribute to the disease include iron metabolism and, possibly, abnormalities in the neurotransmitters dopamine and glutamate.

While there is not yet a cure for RLS/WED, treatment is available.

About the WED Foundation
The WED Foundation is dedicated to improving the lives of men, women and children who live with Willis-Ekbom disease. Founded in 1992 as the Restless Legs Syndrome Foundation, the organization’s goals are to increase awareness, improve treatments, and through research, find a cure. The WED Foundation serves healthcare providers, researchers, over 4,000 members, and millions of individuals in the United States and Canada. The WED Foundation has awarded $1.4 million to fund medical research on RLS/WED causes and treatments. For more information, please visit

About XenoPort
XenoPort, Inc. is a biopharmaceutical company focused on developing and commercializing a portfolio of internally discovered product candidates for the potential treatment of neurological disorders.

Monday, November 11, 2013

Guest Blogger - 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 was going for several days without sleep. My condition was affecting my job performance and home life. The neurologist started me on Requip and almost immediately I was getting 7-8 hours of restful sleep a night for the first time in as long as I could remember. However with increased dosages the Requip, the medication soon started losing its ability to relieve my symptoms. My doctor soon switched to Mixapex. I started with low doses, then progressed to Mixapex ER 1.5.

I was still experiencing what I refer to as breakthroughs (sleep) during the night so we added another .5 to 1.0 mg at night. This helped most nights, but I soon could not find any relief during, and right after a full moon. I also find that drastic changes in atmospheric pressure changes impact my WED/RLS. I’ve tracked/documented these symptoms. In some cases, I’ve gone up to 5 days without any sleep.

I should also mention that my maternal aunt and paternal grandmother suffered from WED/RLS as well. This condition causes depression, sleep deprivation, confusion, and all around irritability. I should also mention that twice during major surgery and recovery I have woke up while under anesthesia due to the WED/RLS severity.

I hope that this will assist you in your research.

Donna M.