Friday, September 27, 2013

We need your help! Write a review for our Foundation at GreatNonprofits.org

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 by posting a review of your experience with us? You could be the first one to review us! All reviews will be visible to potential donors and volunteers. It’s easy, only takes a minute and your review could help us win a spot on the 2013 Top-Rated List.
Learn about GreatNonprofits Top-Rated Program:
Write a review:
http://greatnonprofits.org/reviews/write/restless-legs-syndrome-foundation-inc

Thursday, September 26, 2013

New “Patient Odyssey” Survey Assessing Day-to-Day Impact of RLS/WED on Both Patients and Loved Ones

WED Foundation and XenoPort Announce Launch of New
“Patient Odyssey” Survey Assessing Day-to-Day Impact of RLS/WED on Both Patients and Loved Ones

-- Survey Launched During National RLS/WED Awareness Week --
-- WED Foundation Also Announces Addition of “Willis-Ekbom Disease”
to MeSH Browser --

Rochester, MN — Santa Clara, CA — September 26 2013 —The Willis-Ekbom Disease (WED) Foundation and XenoPort, Inc. (Nasdaq: XNPT) announced today that they have launched a new “Patient Odyssey” survey, aimed at measuring the challenges of long-term disease management, quality of life (QoL) impact and emotional burden associated with restless legs syndrome/Willis-Ekbom Disease (RLS/WED) among patients, as well as the impact of the disease on relationships with spouses or partners. The survey kicks off during this year’s National RLS/WED Awareness Week, dedicated to the continuation of education that improves diagnosis and treatment of the disease.

“The Foundation looks forward to working with our constituency to dive deeper into the long-term impact of RLS/WED on the patient, including a first-time focus on the impact of the disease from the perspective of spouses and partners,” said Georgianna Bell, executive director of the Willis-Ekbom Disease Foundation. “We hope that the findings of this survey reveal new ways that our organization can provide support to the RLS/WED community, as well as serve as an important educational tool that helps the greater public understand the serious burden of this disease.”

In 2012, the WED Foundation conducted an analysis to examine the patterns, causes and effects of RLS/WED in patients including symptom severity, sleep disturbance and medication dosing for both RLS/WED and comorbid conditions. These findings will be presented at the 2013 World Association of Sleep Medicine (WASM) Congress in Valencia, Spain, from September 28-October 2, 2013. The new “Patient Odyssey” survey is designed to build upon findings from the 2012 survey.
  
“We are excited to support the WED Foundation on this initiative so that collectively we can better understand the needs of patients with RLS/WED, many of whom have the disease for life and struggle to find optimal disease management plans,” stated Ronald W. Barrett, Ph.D., chief executive officer of XenoPort, Inc. “Our goal with this project is to uncover the patient journey and potentially determine how we can improve the lives of these patients and provide support for their loved ones.”

The survey will be distributed to members of the WED Foundation via mail, and will be available online throughout the month of October. RLS/WED patients and their loved ones are encouraged to contact the WED Foundation to learn how to access the survey by visiting www.Willis-Ekbom.org or calling (507) 287-6465.

“Willis-Ekbom Disease” Inclusion in National Library of Medicine Database
The WED Foundation is also announcing the recent addition of “Willis-Ekbom Disease” as a synonym for “restless legs syndrome” to the National Library of Medicine’s Medical Subject Headings (MeSH) browser. Patients, physicians and the general public will now be able to search “Willis-Ekbom Disease” and other related search terms to access peer-reviewed literature related to the disease through the PubMED Health database; search results will also be linked to existing bodies of literature on “restless legs syndrome” to ensure that searches yield complete results about the condition. The PubMED Health database can be accessed online here: http://www.ncbi.nlm.nih.gov/pubmed.

“The name ‘restless legs syndrome’ has been a source of ridicule, resulting in skepticism regarding the disorder as a true medical condition. ‘Restless legs’ also incompletely describes the many manifestations of the disease, as symptoms can in fact occur throughout the body, including the limbs, torso and even the face,” stated Ms. Bell. “It therefore became imperative for our organization to ensure that the official disease name – ‘Willis-Ekbom Disease’ – be added to the MeSH browser. This inclusion demonstrates that the work of our organization, as well as those of our partners, has begun to make a mark in the medical community and will continue to improve the well-being of patients with RLS/WED.”

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. The diminished quality of life associated with RLS/WED can wreak havoc on an individual's family, social and professional life. Emerging evidence also suggests the disease might be associated with increased cardiovascular and cerebrovascular risk.

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. Mild symptoms can often be managed by identifying triggers and employing lifestyle changes to reduce them. For moderate-to-severe primary RLS/WED, prescription medications can help alleviate symptoms.

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 Foundation serves healthcare providers, researchers, over 5,000 members, and millions of individuals in the United States and Canada. The Foundation has awarded $1.4 million to fund medical research on RLS/WED causes and treatments. For more information, please visit http://www.Willis-Ekbom.org.

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. XenoPort is currently commercializing gabapentin enacarbil in the United States and developing its novel fumaric acid ester product candidate, XP23829, as a potential treatment for relapsing-remitting multiple sclerosis and/or psoriasis. Gabapentin enacarbil is being marketed in Japan by Astellas Pharma Inc. XenoPort's pipeline of product candidates also includes potential treatments for patients with spasticity related to spinal cord injury and Parkinson's disease.


To learn more about XenoPort, please visit the company Website at www.XenoPort.com.

Wednesday, September 25, 2013

Awareness Cartoon Series: 3 of 12

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 send any ideas to info@willis-ekbom.org.
Do you have suggestions for future cartoon ideas or want to discuss some ideas with us? Please contact us at info@willis-ekbom.org or correspond with Kathy Page at CentralMissouri@rlsgroups.org. Kathy is working with the cartoon artist to generate monthly ideas.

Thursday, September 19, 2013

FOR IMMEDIATE RELEASE: AWARENESS DAY 2013



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 encouragement to continue to educate ourselves and work together as we take steps towards developing better treatments and a cure for WED/RLS.

“WED Awareness Week 2013 was designed not only to honor the many accomplishments we have made so far but also to recognize that we still have a long way to go. There are still so many people with WED/RLS who don’t have access to the resources or information they need to be educated about their disease. In addition, we need for research and treatment options to help people lead healthy and productive lives,” explained Georgianna Bell, Executive Director of the Willis-Ekbom Disease Foundation.

Willis-Ekbom disease is a disruptive neurological disease characterized by an irresistible urge to move and by uncomfortable sensations in the legs or other limbs. The symptoms typically occur in the evening and worsen with rest. Thus for many, WED/RLS severely disrupts sleep. Lack of awareness of this common disorder has caused many to suffer for years from misdiagnosis or a lack of diagnosis.


On WED Awareness Day and throughout the year, the nonprofit WED Foundation educates patients and healthcare providers and works to improve the future by funding research to find a cure. Locally, the support groups across the nation help increase awareness, hold educational meetings, and provide support to many people and families living with WED/RLS. To learn more, visit the WED Foundation's website at www.willis-ekbom.org. 



Tuesday, September 3, 2013

Awareness Cartoon Series: 2 of 12

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 send any ideas to info@willis-ekbom.org. 


Do you have suggestions for future cartoon ideas or want to discuss some ideas with us? Please contact us at info@willis-ekbom.org or correspond with Kathy Page at CentralMissouri@rlsgroups.org. Kathy is working with the cartoon artist to generate monthly ideas.