Summary
Description
About Dup15q Alliance
Dup15q Alliance is a rare disease nonprofit 501(c)(3) organization with approximately $1 million in annual revenue that is the unique global organizer of research and clinical care, family education, support, and advocacy for individuals with duplication 15q syndrome. Founded in 1994, Dup15q Alliance’s mission is: to empower individuals living with dup15q syndrome to reach their full potential by advancing breakthrough research and life-changing therapeutic treatments, supporting families affected by dup15q, and promoting advocacy.
About the Position
Dup15q Alliance is looking for an executive director with the experience and leadership capabilities necessary to help us in an exciting new phase of growth. We are actively promoting and funding research, particularly projects aimed at identifying possible therapeutics to treat the symptoms of Dup 15q syndrome. We seek to grow our organizational competence and quadruple our fundraising over the next five years to help us accomplish these aims.
The priorities for the first 12 to 18 months of the Executive Director’s tenure include:
- conducting a major capital campaign with the goal of providing next stage funding for promising therapeutics research
- in partnership with the Alliance’s Director of Science and Clinical Initiatives, leading work to accomplish the goals of the three pillars of our Strategic Plan: Advancing Science, Supporting Families, and Building Community
- encouraging and participating in regional/state/international family gatherings to spark and solidify connections among families and educate and inspire those who love and support our families
- positioning the Alliance as the patient advocacy group for individuals with Dup15q syndrome
Key Responsibilities
The Executive Director provides strategic leadership to the organization and, in partnership with the Board of Directors, and oversees its day-to-day operations by fulfilling the following key responsibilities:
- Oversee fundraising, programs, and operations to accomplish the goals our strategic plan and our mission of advancing research on potential therapeutic treatments of Dup15q syndrome and providing connections and support for our Dup15q families.
- Maintain a strong Dup15q Alliance brand through all communications, including web presence, internal and external communications, public relations, event planning/management, and marketing.
- In partnership with the Director of Science and Clinical Initiatives, be a key point of contact for the Dup15q Alliance with partner organizations and individuals.
- Supervise, lead, coach, and develop the Dup15q Alliance staff team, tracking progress and measuring success in a way that can be effectively communicated to the Board and other stakeholders.
- Actively engage with and energize Dup15q Alliance families, volunteers, committees, partnering organizations, funders, and other constituents.
- Participate in all Dup15q Board of Director meetings, including presenting the Executive Director’s monthly report.
- Serve as a member of the Board’s Finance Committee and Executive Committee, and other committees as necessary.
- Direct the preparation of annual budgets and any additional budgets required, with the approval of the Board.
- Ensure compliance with non-profit tax, solicitation and other applicable state and federal law.
The Executive Director reports to the Board of Directors, and all staff report to the Executive Director. Current staff include: Director of Scientific and Clinical Initiatives; Administrative Director, Family Support Services Manager; Business Manager; and Database and Fundraising Coordinator.
Candidate Qualifications for this position include:
- Proven fundraising, marketing/branding, fiscal management, and board development experience.
- Strong leadership skills, including the ability to: set clear priorities; delegate and guide the work of remote staff; collaborate with the Board of Directors and other volunteers; support and enable sound decision-making; and manage a budget.
- Outstanding presentation and communication skills and the experience and ability to be an engaging spokesperson, fundraiser and relationship builder.
- Excellent coalition-building skills, including the ability to communicate and work effectively with a variety of internal and external stakeholders and be a persuasive negotiator, able to achieve consensus among differing opinions.
- Integrity; a strong work ethic and sense of accountability.
- Prior relevant nonprofit experience ideal; management of a rare disease organization a bonus.
- Bachelor’s degree
