President and Chief Executive Officer

The Batten Group, a premier national executive search andconsulting firm specializing in nonprofit, healthcare, highereducation, and mission-based philanthropy, has been retained by theHuntington's Disease Society of America to conduct a nationalsearch to identify candidates to lead the organization as Presidentand Chief Executive Officer.

About Huntington's Disease Society of America(HDSA)

The Huntington's Disease Society of America, the premiernonprofit organization dedicated to improving the lives of everyoneaffected by Huntington's disease space, was founded in 1967 byMarjorie Guthrie, widow of folk legend Woody Guthrie, who succumbedto Huntington's disease. Initially established as the Committee toCombat Huntington's Disease (CCHD), the organization became HDSA in1983. Huntington's disease (HD) is a genetic order causingprogressive nerve cell dysfunction and eventual death. HD ischaracterized by a triad of symptoms, including progressive motordysfunction, behavioral disturbance and cognitive decline. Thereare approximately 41,000 symptomatic Americans and more than200,000 at-risk of inheriting the disease.

Marjorie's vision for HDSA was to provide hope and support tofamilies affected by HD, advocate for research and treatments, andraise public awareness. Ending her correspondences with "Love andPeace", HDSA continues her legacy by funding research, offeringresources and support, and through the HDSA Centers of Excellenceacross the country.

Through the dedicated efforts of the HDSA national staff andnetwork of amazing volunteers who lead chapters and affiliates, theorganization strives to achieve their mission to improve the livesof everyone affected by Huntington's disease and their families andto realize their vision of a world free of Huntington's disease.HDSA funds research with the goal of discovering effectivetreatments to slow Huntington's disease and eventually lead to acure. The HDSA Centers of Excellence program provides amultidisciplinary team approach to Huntington's disease care. Thereare currently 56 HDSA Centers of Excellence and 11 Partner Sitescovering 36 States plus the District of Columbia.

Position Summary

The Chief Executive Officer will report into and workcollaboratively with the Board of Trustees, leading the HDSA staffand delivering on its short-term strategies and long-term vision.Specifically, the CEO will ensure that HDSA's fiscal, operational,fundraising, marketing, human resource, research, technology, andprogrammatic goals are effectively prioritized and implementedacross all segments of the national organization.

Position Duties and Responsibilities

The major responsibilities of this position include, but are notlimited to:

Mission Impact

The CEO is responsible for advancing the HDSA's mission of "improving the lives of everyone affected by Huntington's diseaseand their families" on the path to our vision of a world free ofHD. This will be achieved by managing our pillars of Care,Community and Cure through the funding of research, programs andeducation, while leading the HDSA staff. The CEO works closely withthe Board to craft and adapt the strategy to achieve this increasedimpact, including raising the funds to support it. With the supportof their team, the CEO will establish and build relationships withtop leaders in the business, scientific and philanthropiccommunities. The CEO also engages the community to get involved inresearch, providing community to each other, educating and reducingthe stigma of HD

Resource Development

The CEO is charged with driving key results in fundraising;providing oversight in the identification, cultivation, andsolicitation of prospective donors and corporate partners;leveraging personal and professional contacts and relationshipsinto fundraising opportunities; and promoting a culture offundraising at the staff and board levels.

Strategic Management

The CEO serves as the principal resource to the Board ofTrustees and its key committees and gives strong direction inpolicy formulation and interpretation. The CEO will partner withthe Board of Trustees and the staff leadership team to craftorganizational goals and develop strategies to ensure that they areachieved.

Organization Management

The CEO is accountable for building high-performing teams,ensuring all teams are aligned and collaborating to achieveorganizational results. They maintain accountability for theoperational and fiscal integrity of the organization withinpolicies set by the Board of Trustees. The CEO assessesorganizational capacity and identifies gaps in systems andstaffing; directly supervises Senior Leadership positions andestablishes individual goals; works with the Chief OperatingOfficer to manage organizational spending, monitors budgetcompliance, and mitigates financial risks. The CEO will prioritizethe initiatives and efforts of the organization to achievesignificant goals as outlined by the strategic plan and guidance ofthe Board of Trustees. Finally, the CEO will lead the organizationin building consensus, continuity, and a strong culture of "OneHDSA" to ensure mission alignment with our national office andacross our Chapters and Affiliates.

Position Requirements

• Charismatic leadership combined with comprehensive managementability.
• A passionate sense of urgency to boldly move the HDSA missionforward.
• Relevant understanding of the nonprofit sector and interactingwith diverse constituencies and boards.
• Expertise on issues relevant to the HDSA, includingphilanthropy, research, programs, advocacy, financial and nonprofitmanagement.
• Extensive senior strategic leadership experience in themanagement of organizations of comparable size and mission.
• Excellent ability to communicate including public speaking
• Ability to earn the confidence and respect ofstakeholders.
• A track record of building collaboration with internal andexternal stakeholders.
• Experience across multiple sectors, including nonprofit,public, and corporate environments.
• Experience in developing partnerships and building teams
• Experience in revenue generation and increasing philanthropicsupport.
• The intellectual horsepower and intellectual curiositynecessary to explore new ideas and innovative approaches to goalmanagement and problem resolution.
• Unimpeachable integrity; a strong work ethic and sense ofaccountability; managerial courage and strong decision-makingskills.

Candidate Qualifications

• Outstanding presentation and communication skills and theexperience and proclivity to be an engaging spokesperson,relationship builder and fundraiser.
• A financially savvy and politically astute leader with theability to set clear priorities, delegate, and guide investment inpeople and systems; keen analytic, organization, andproblem-solving skills, which support and enable sounddecision-making.
• Excellent coalition-building skills with an ability tocommunicate and work effectively with a variety of internal andexternal stakeholders; a persuasive negotiator able to achieveconsensus amongst differing opinions.
• Significant board development, fundraising, marketing/branding,and fiscal management experience.
• Strong commitment to the professional development of staff;successful track record of development and retaining a diverseteam.
• Prior relevant nonprofit experience ideal; management of ascientific, programmatic and/or research related voluntary healthorganization preferred.
• Proven professional experience.
• Minimum of a bachelor's degree, ideally with an MBA, MPH, orrelated advanced degree.

POLICY ON PLACEMENT AND RECRUITMENT

The Batten Group and Huntington's Disease Society of America areequal opportunity employers committed to the principles ofnon-discrimination in the workplace. Candidates will not bediscriminated against based on age, race, creed, color, religion,sex, sexual orientation, national origin, disability, maritalstatus or any other basis that is prohibited by federal, state, orlocal law.