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 in...

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: personnel@willis-ekbom.org. Deadline to apply is March 21, 2014. 

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