Monday, February 24, 2014

Job Opening: Executive Director for WED Foundation

Organization Overview 
In 1992, the Restless Legs Syndrome Foundation was incorporated as a nonprofit to address the growing need for information and research about Willis-Ekbom disease, also known as restless legs syndrome or WED/RLS.  Since its inception, the Foundation has focused upon (1) increased awareness, (2) publicizing treatments through publications approved by our Medical Advisory Board, and (3) finding a cure by providing research grants to qualified recipients evaluated by our Scientific Advisory Board.  On February 4, 2013, the Foundation completed the legal work to do business as the Willis-Ekbom Disease (WED) Foundation, a name that combines the names of the neurologist (Dr. Thomas Willis) who in 1865 first acknowledged the disease and the physician (Dr. Karl Ekbom) who in 1944 described the aspects of the condition.   The Foundation’s headquarters are located in Rochester, Minnesota.

Position Summary
The Foundation seeks an energetic and creative person to assume the role of Executive Director and to manage all aspects of the WED Foundation operations with an emphasis on development. 

Key Responsibilities
Managing the WED Foundation Membership Base – The WED Foundation has over 4,200 active members.  Members pay a $30 annual membership fee and receive a quarterly publication, Nightwalkers.  The Executive Director is responsible for managing the membership base and for developing methods to increase our membership base and its involvement with the Foundation. 

Raising Funds for the Activities of the WED Foundation – The Executive Director is responsible for building philanthropic relationships and soliciting major gifts for current and future WED Foundation campaigns.  The Executive Director is responsible for establishing effective and long-lasting relationships with individual donors, foundations, and corporations (including pharmaceuticals) in order to support (1) acquisition and dissemination of information about WED, (2) scientific and medical research on WED, and (3) approval and review of Quality Control Centers of Excellence in caring for patients who have WED.    

Assuming the Role of Spokesperson for the WED Foundation and Its Members – The Executive Director is responsible for managing all external communication for the Foundation whether they are responses for information from external organizations or internally generated efforts to disseminate information about WED.  This encompasses communicating with the press, the corporate community, the government health organizations, and other nonprofits entities as well as representing the Foundation at medical and scientific meetings.  The Executive Director is the liaison between the WED Foundation and the domestic and international patient and scientific communities, including organizations such as the National Institute for Health and the Food and Drug Administration.

Maintaining and Updating Our Online and Print Publications – The WED/RLS Foundation maintains a webpage that serves as a major source of information for individuals with WED/RLS as well as publishes in print and online publications. The Executive Director is responsible for supervising the creation of this content and for implementing the publication whether it is online or in print.  More specifically, the Executive Director is expected to plan the focus of each Nightwalkers issue, write some articles, and proof the content included in the issues.  And, this individual will be responsible for providing focus, identifying authors, and proofing all science-based publications and consumer oriented publications that have medical/science content.  The Foundation also communicates with the public and its members through social media such as Facebook, Twitter, and Webinars. 

Implementing and Managing the Science and Research Programs of the Foundation – The Executive Director is responsible for managing the Brain Bank program, the research grant proposals and awards, and other scientific efforts sponsored by the Foundation.  This includes the recently implemented Quality Care Center program.    

Working with the Board and Advisory Boards – The Executive Director must work closely with the Board of Directors, and the two advisory boards, one Medical and one Scientific, to ensure that work flow and tasks are completed in a timely manner. 

Developing a Vision for a WED Patient Organization for the Future – The Executive Director is responsible for planning, implementing, and managing the evolving role of a patient organization devoted to the search for a cure for WED. 

 Candidate Specifications

·         Five years of nonprofit experience including expertise in resource development with emphasis on major gift cultivation and solicitation experience required
·         Medical background is preferred
·         Proven record of building relationships with donors, grant writing, managing capital campaigns, and meeting or exceeding fundraising goals
·         Superior interpersonal skills that focus upon connecting and building relationships
·         Excellent communication skills including the ability to write clear and effective correspondence
·         Maintain and utilize donor base software for development of key major donor prospects (knowledge of Blackbaud software products is a plus)
·         Serve as liaison to the Board of Director’s Development Committee
·         Creative and resourceful personality
·         Prepare annual performance goals , track and report progress to the Board of Directors
·         Bachelor’s degree in communications, public relations, marketing, philanthropy, not for profit management, or related field required
·         Familiar with Microsoft Office products is preferred (Outlook, Word, Excel, PowerPoint and Publisher)

Personal Characteristics

·         A passionate individual who enjoys working in a patient support organization
·         A person driven to produce results with limited staff and resources
·         An individual who cares about those suffering from WED and who foster a vibrant community of members, care givers, quality care institutes through the work of the Foundation

To Apply:  
Interested applicants please send cover letter with salary expectations and resume to: Deadline to apply is March 21, 2014. 

Thursday, February 20, 2014

Study sheds light on treatment for Willis-Ekbom disease (restless legs syndrome)

Study sheds light on treatment for Willis-Ekbom disease (restless legs syndrome): Pregabalin (Lyrica) found as effective as FDA-approved pramipexole (Mirapex) without causing the worsening of symptoms that commonly occurs with pramipexole.

Rochester, Minn. - February 20, 2014A large-scale study of treatment for Willis-Ekbom disease (restless legs syndrome, or WED/RLS) published February 14 in the New England Journal of Medicine shows that the drug pregabalin (Lyrica) controls symptoms as well as pramipexole (Mirapex), but with significantly lower incidence of augmentation. Augmentation is a worsening of symptoms with long-term use, and occurs in about one third of WED/RLS patients who take the intermediate-acting dopamine drugs pramipexole and ropinirole (Requip). Both pramipexole and ropinirole are FDA approved for treating WED/RLS and commonly used as first-line therapy.

“Over the long term, the most commonly used treatments for WED/RLS make a bad disease worse,” says Richard P. Allen, PhD, who is first author of the report. Allen is an associate professor in the Department of Neurology at Johns Hopkins University past chair of the WED Foundation’s medical advisory board.
“This study is an important contribution to our knowledge of the treatment of a widespread and very serious medical condition,” said Karla Dzienkowski, executive director of the Willis-Ekbom Disease Foundation, headquartered in Rochester, Minn.

WED/RLS is a disease that produces an overwhelming evening and nighttime urge to move the legs. It wreaks havoc on sleep, disrupts quality of life, and is associated with increased risk of cardiovascular disease. Clinically significant WED/RLS affects from 2 to 3 percent of adults and progressively worsens over time.

While previous studies found that one third of patients became worse over three years of taking ropinirole and pramipexole, it was unclear whether this was caused by the drugs themselves or by natural worsening of symptoms over time.

The new study used a head-to-head comparison of two drugs at their usual doses for treating WED/RLS: Pramipexole is a drug that mimics dopamine in the brain and is FDA approved for treating WED/RLS. Pregabalin is a pain medication that is neither FDA approved for treating WED/RLS nor commonly used to manage the condition.

In the study, 719 patients received standard doses of either 0.25 or 0.5 mg pramipexole or 300 mg pregabalin. Both drugs were found equally effective in initially relieving WED/RLS symptoms, but after one year of treatment, pregabalin showed a better outcome.
Prior studies found that pramipexole and ropinirole (another dopamine mimic) deceptively provide effective initial treatment followed by an insidious worsening of the disease. This often results in very severe—even painful—symptoms that require a very difficult withdrawal from the medication. “What starts as an evening or nighttime disorder expands to affect the afternoon and even the entire day of some WED/RLS patients, totally disrupting life and the ability to work efficiently,” says Allen.

The new research found worsening of WED/RLS symptoms in only 1–2% of patients taking pregabalin—consistent with the rate of expected natural disease progression. In contrast, a dramatically higher rate of worsening symptoms occurred with pramipexole: 7–9%, mostly during the second half of the 12-month study.

The company producing pregabalin (sold as Lyrica) has not made plans to seek FDA approval for treating WED/RLS. The similar drug gabapentin enacarbil (sold as Horizant) was approved for treatment of WED/RLS in 2011.

Researchers from Pfizer, Massachusetts General Hospital in Boston, the Sleep Research Institute in Madrid, and Tampere University Hospital in Tampere, Finland, also contributed to the study.


About the WED Foundation
The WED Foundation is dedicated to improving the lives of men, women and children who live with Willis-Ekbom disease (restless legs syndrome, or WED/RLS). Founded in 1989 in Rochester, Minn., the Foundation’s goals are to increase awareness, improve treatments, and through research, find a cure. The Foundation serves health care providers, researchers, over 5,000 members, and an estimated seven million individuals in the United States and Canada who have the disease. The WED Foundation Research Grant Program has awarded $1.4 million to fund medical research on WED/RLS causes and treatments. For more information, visit


Karla Dzienkowski
Interim Executive Director
The Willis-Ekbom Disease Foundation


Thursday, February 13, 2014

Lifestyle, Emotional and Relationship Impact of RLS/WED

Lifestyle, Emotional and Relationship Impact of RLS/WED
From the Perspective of the Patient and the Partner/Spouse
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 Restless Legs Syndrome/Willis-Ekbom Disease (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 lifestyle, emotional and relationship burden, from the perspective of both the patient and the spouse/partner. Findings related to treatment experience, including symptom control and medication switching, are available separately on the WED Foundation website.

Couple Profile
·         Ninety percent (90%) of spouses/partner respondents have been in a committed relationship for more than 15 years.
·         Eighty percent (80%) of spouses/partners learned about their loved one’s RLS/WED after getting married/entering into a civil union.
·         Almost half (46%) of spouses/partners believe that they should be involved in their loved one’s decision regarding medication and half (50%) have previously encouraged their loved one to ask their doctor for a different medication.
·         Fifty percent (50%) of spouses reported being “extremely” aware of their loved one’s RLS/WED symptoms on a daily basis.
·         Although one-fifth (20%) of spouses/partners claim RLS/WED has negatively impacted their relationships, almost all (99%) reported that RLS/WED has never made them consider ending the relationship.

Impact on Sleep and Relationships
·         Both patients and spouses/partners report a restful night’s sleep as the area most affected by RLS/WED (85% and 38%, respectively).
·         Sixty-five percent (65%) of patients and almost one-quarter (24%) of spouses/partners report RLS/WED symptoms impacting their sleep three or more days per week.
·         About one-third (34%) of patients and spouses/partners (36%) admit sleeping in a separate bed due to RLS/WED.
·         As a result of sleep loss, about four in five (81%) patients and one-third (33%) of spouses/partners report their productivity being at least somewhat impacted the following day.
·         Nine percent of patients and 12% of spouses/partners report RLS/WED impacting their intimacy.

Impact on Social and Leisure Activities
·         Patients and spouses/partners report similar areas that are impacted by RLS/WED: mood and overall happiness (37% patient, 15% partner), ability to travel (37% patient, 25% partner), ability to participate in social events (24% patient, 18% partner) and relationships (15% patient, 20% partner).
·         Almost half (47%) of patients and about one-third (34%) of spouses/partners report avoiding the movies/theater/concerts as a result of RLS/WED.
·         Forty-three percent of patients and 36% of spouses/partners report avoiding long car trips as a result of RLS/WED.
·         About one-third (34%) of patients and about one-fifth (22%) of spouses/partners report avoiding plane travel as a result of RLS/WED.

Impact on Emotional Health
·         Almost half (45%) of patients wish their family and friends were more supportive and understanding and 86% “agree” that there is a tendency to trivialize RLS/WED in society and the media.
·         A little more than half (56%) of patients “agree” that their voice is not being heard.
·         Sixty-seven percent (67%) of patients report being at least somewhat sad or anxious due their RLS/WED in the past two weeks. One in 10 (10%) report being very anxious and/or sad.

#  #  #

Monday, February 3, 2014

Guest Blog: Please Sit Down by Ed Murfin

Several years ago, I traveled 250 miles to visit my son’s family for a weekend to attend my granddaughter’s dance recital. I made it a practice of never missing one of those kinds of things. The program was held in a city auditorium. My wife and I sat in seats on the outside aisle, as we do most everywhere, so I could get up easily without disturbing other folks. True to form, after about 40 minutes of sitting still, my WED/RLS begins to take over. Our granddaughter was still further down on the program.

The side aisle was wide so I could easily get up and move over to the side near a door with a nice tall plant so I would not disturbed anyone. So I had thought. Then there was the usher. A tall nice looking lady, with a military presence, saunters up to me and whispers, “Sir, you’ll have to sit down. This area can only be used by persons in wheelchairs.”

“Ma’am, I have Restless Legs Syndrome and I’m unable to sit any longer but I want to see my granddaughter dance.”

“Well, you’ll have to get a wheelchair if you don’t want to sit in a seat.”

“Ma’am, I couldn’t even sit in a wheelchair.”

“Well, then you’ll have to leave. That’s the rule.”

Whereupon she ushers me out the door – all of which was more disturbing to the people sitting near my wife than if I’d stood and walked around the whole time. I stayed close to the door out in the mezzanine and was able to hear the music and determine that it was near the right time. Luckily, a man came out that door at the right moment and in I slipped. My granddaughter was on stage doing her thing. But before her part was over, I felt the presence of the military again. I said, “Ma’am, that’s my granddaughter up there and I’m staying for her performance.”

The lady left, but before my granddaughter’s act was finished, the usher returned with reinforcement and I had to duck out the door fast. I was miserable with my afternoon attack of WED/RLS, but their misunderstanding and refusal to listen made me even more uncomfortable. And this is not the only time that a similar thing has occurred. The misery of WED/RLS.

About the guest blogger:

Ed Murfin, now 78 years old, is a former Support Group Leader from Jacksonville, Florida and has been a Foundation Advocate/Contact for northeast Florida and southeast Georgia since 2008.  He is looking to plan a regional educational meeting in Florida at the Mayo Clinic in late 2014.