President/CEO for CFIDS Association of America

Position: President and CEO

Organization: CFIDS Association of America

Location: Negotiable

Summary:

The CFIDS Association of America, the nation's leading non-profit organization dedicated to conquering chronic fatigue and immune dysfunction syndrome, also known as chronic fatigue syndrome and myalgic encephalomyelitis (ME/CFS), seeks a President and CEO who is passionately dedicated to the mission, an extraordinary leader, and able to work harmoniously with multiple constituencies.
The Association is a performance-based philanthropy organization focused on investing in transformative research. Since 1987, the Association has invested more than $30.4 million in initiatives to bring an end to the pain, disability, and suffering caused by ME/CFS and has been a leader in a sector-wide shift from traditional pass-through grantmaker to leading patient-centered, progress-driven research that yields safe and effective treatments and cures. Today, every research dollar that the Association invests yields $8 in follow-on funding from other institutions.
The CFIDS Association seeks a highly entrepreneurial, growth-oriented leader to build on its track record of investing in cutting edge research and engaging patients and partners in the fight to make ME/CFS understood, diagnosable, and curable. Exceptional candidates will offer a superb executive management skill set, a track record of driving organizational growth and expansion, fundraising expertise, the credibility and presence required to be the leader of a cutting-edge research organization, and a deep passion for improving patient outcomes and lives.
The President & CEO position is a full-time role. The Association is currently headquartered in Charlotte, NC. Staff is virtually located across the country; the President & CEO's location is negotiable.

Responsibilities:

The President & CEO directs the Association's research, engagement, communications, and development strategies. Specific responsibilities include, but are not limited to, the following:Strategic Leadership and Vision

• Articulate the Association's vision and mission with passion, clarity, and inspiration to a wide range of audiences and stakeholders
• Identify and leverage emerging opportunities to deepen the organization's impact and reach and/or funding
• Collaborate with the Board of Directors to refine, implement, and measure progress on the current strategic plan and lead the development of subsequent strategic plans and initiatives

Research

• Work in close partnership with the Scientific Director to refine and articulate a vision for the Association's translational research programs and initiatives
• Establish, manage, and strengthen appropriate and productive partnerships to further strengthen the organization's position as a hub of ME/CFS translational research

Fundraising

• Act as an enthusiastic and inspiring fundraiser for the Association and cultivate a fundraising culture within the organization
• Provide the vision and direction required to increase and diversify funding; direct the establishment of aggressive goals and plans to secure new and increased funding sources
• Be fully aware of and utilize emerging new technologies and strategies in service of fundraising and communications
• Work closely with Director of Development and Board of Directors on a range of fundraising initiatives

Communications

• Serve as a dynamic and credible voice and advocate for the organization in the patient, scientific, and funding communities, building connections, support, and awareness across these constituencies
• Appropriately and regularly engage with a range of stakeholders to ensure that the Association's message is clearly communicated
• Implement and utilize channels for effectively communicating successes, updates, and a broader strategic vision for the organization

Organizational Management

• Supervise a team that includes the Scientific Director, Director of Development, Engagement Manager, and Chief Financial Officer, who are located in multiple locations across the country
• Ensure a collaborative, communicative, and effective organizational culture
• Cultivate a strong and transparent working relationship with the Board of Directors, ensuring open communication around organizational progress and updates
• Provide oversight for all fiscal, legal, and governance requirements, including budget development and management, compliance, and reporting and generally ensuring best practices in all aspects of fiscal, legal, and governance operations
• Oversee and strengthen the organizational infrastructure necessary to support and sustain the Association's growth

Qualifications:

Critical qualifications for the President & CEO include a track record of driving growth and expansion, the presence required to serve as a credible and inspirational spokesperson for the Association, and a passion for leading a groundbreaking research organization that is focused on making an impact on patient lives. Other desired skills and experiences include:

• A deep sense of compassion for the full range of struggles and obstacles that patients and families suffering from chronic conditions such as ME/CFS face and a passion for improving outcomes and experiences for these individuals
• A strong sense of optimism and hope and the ability to convey that both externally and internally
• At least 7-10 years senior staff level management experience in programs and operations in a related field or other transferrable set of experiences
• Exceptional strategic leadership skills, including the ability to develop and articulate a vision for long-term growth and impact and lay out a road map for achieving that vision
• Agility and the capability to think strategically while executing tactically within a lean and resource-constrained environment
• The highest levels of personal and professional integrity
• Marketing expertise, and/or a proven ability to raise awareness and visibility for an organization or initiative
• Science background and/or the ability to understand, interpret, and translate complex scientific concepts and information for a range of audiences
• Excellent communication skills, both internally and externally, as an inspirational, galvanizing spokesperson for the Association
• A demonstrated track record of fundraising success, including the ability to develop, articulate, and implement a comprehensive fundraising strategy that includes a diverse range of funding sources
• A truly entrepreneurial spirit with the ability to identify and seize opportunities and position an organization for significant growth in scale and impact
• Strong people and team management skills with an emphasis on collaboration and accountability
• Outstanding interpersonal and relationship building skills; the ability to build trusting and productive relationships with all of the stakeholders who are critical to the Association's success, including patients, scientists, funders, and policy-makers
• Experience working closely and collaboratively with a Board of Directors

Compensation and Benefits:

Salary is competitive and commensurate with experience.

About CFIDS Association of America:

The CFIDS Association of America is the largest and most active charitable organization focused on leading efforts to identify safe and effective treatments for ME/CFS. Since 1987, the Association has invested more than $30.4 million in initiatives to bring an end to the pain, disability and suffering caused by ME/CFS. The Association is an innovative leader in a sector-wide shift starting to occur from traditional pass-through grantmaker to leading patient-centered, progress-driven research that yields safe and effective treatments and cures.Our Mission:We will make ME/CFS understood, diagnosable and treatable.Our Strategies:

• Identify safe and effective treatments for ME/CFS
• Strengthen the ME/CFS community by empowering patients and engaging greater numbers in our cause
• Aggressively expand funding for research that will lead to approved treatments and cures for ME/CFS

Our Core Values:

• Purpose
• Collaboration
• Respect
• Integrity
• Innovation

The CFIDS Association of America has been at the leading edge of ME/CFS research, policy and education for more than 25 years. The Association responsibly represents the needs of ME/CFS patients and their loved ones, working to make ME/CFS widely understood, diagnosable and treatable. Inspired by the courage and passion of volunteers and fueled by gifts small and large from supporters committed to a vision of a world without ME/CFS, the CFIDS Association leads with purpose, collaboration, respect, integrity and innovation.Milestones:Over the past few years, the Association has ramped-up its efforts to focus on treatment-directed research and raise capital to fuel those activities, including:

• SolveCFS BioBank:In 2010, the Association established the first patient-centered integrated registry and biorepository for ME/CFS with infrastructure support provided by the Genetic Alliance BioBank. Individuals with ME/CFS, family members, and healthy controls aged 10 and older from the U.S. and other countries can now participate as active stakeholders in ME/CFS research through the SolveCFS BioBank. This important research resource provides laboratory researchers with access to a well-characterized clinical population they would otherwise be challenged to reach.
• Research1st Website and Blog:On May 24, 2011, the Association launched Research1st, a website and blog designed to become the one-stop-shop for current, credible information about ME/CFS and research efforts to solve it. The blog is now home to 270 posts authored by staff and guest contributors, including some of the leading experts in ME/CFS research and patient care. Reader comments posted to the blog provide a means for readers to share insights, pose questions and connect; pre-moderation of comments ensures a respectful environment for discussions.
• The Catalyst Fund:In the summer of 2011, the Association announced the creation of this fund, established to speed discovery and transform the way that ME/CFS research is conducted. As a major gift strategy, the fund attracted considerable lead investment and is a centerpiece of future efforts. Donors at all levels of giving are recognized as Catalysts who speed progress.
• The Research Institute Without Walls (RIWW): In 2012, the Association launched eight research projects organized under the RIWW – a groundbreaking effort to facilitate tightly integrated, expert-led research project all pointed to one goal: to advance objective diagnosis and effective treatment of ME/CFS. At the core of the RIWW is the SolveCFS BioBank and researchers linked through a secure data-sharing platform, creating a virtual institute that leverages leading experts at top institutions working on projects of high scientific and strategic merit.

About Koya Leadership Partners:

Koya Leadership Partners is a national retained search and consulting firm that works exclusively with non-profits and social enterprises. We deliver measurable results, finding exceptionally talented people who truly fit the unique culture of our client organizations. For more information about Koya Leadership Partners, visitwww.koyapartners.com.