Chief Advancement Officer

February 2024 | Remote / Northeast, USA
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Cure Rare Disease (CRD) seeks an ambitious and entrepreneurial Chief Advancement Officer to build and grow a comprehensive fundraising program in order to achieve its mission and ultimately cure patients.  

About Cure Rare Disease

doctor holding an ipad with test results displayedCRD’s mission is to advance and fund the development of life-saving genetic medicines for rare and ultra-rare patient populations, especially among those populations deemed too rare to treat by commercial organizations. To accomplish this goal, CRD spearheads drug development programs through a collaboration of world-renowned researchers and clinicians, policy experts and generous donors. CRD is fundamentally changing the rare and ultra-rare disease experience and burden for millions of people around the world with its discoveries and methods—while bringing hope to patients waiting for a cure.

Cure Rare Disease boasts a therapeutic pipeline of over 15+ programs, each being engineered to improve the lives of patients across the globe who are impacted by devastating rare diseases for which there are no treatments.

Richard Horgan, Founder and Chief Executive Officer

Rich Horgan is the Founder and Chief Executive Officer of Cure Rare Disease. He has a deep passion for creating systems to enable and accelerate the development of promising science into new therapeutics, in honor of his late brother, Terry, who lived with an ultra-rare form of Duchenne muscular dystrophy. He formed an interdisciplinary collaboration of world-class researchers and clinicians to pioneer a novel framework to enable the development and financing of therapies for ultra-rare, genetic diseases.

Prior to making his foray into biotech, Rich had extensive experience working in new business development at Corning Incorporated, where he led the successful launch of a new product line. He holds a BS from Cornell University, where he graduated summa cum laude, and an MBA from Harvard Business School, where he was awarded the Blavatnik Fellowship for Life Science Entrepreneurship. Rich was recognized by Insider as one of ‘30 leaders under 40 transforming healthcare in 2020 and, most recently, was named on the 2021 Forbes 30 under 30 list.

About the Position

a family of four wearing cure rare disease shirtsCRD is searching for a new Chief Advancement Officer to advance its mission forward—and ultimately cure patients—by building and driving a structured development program with a special focus on major donor cultivation and stewardship. This role is ideal for an ambitious, entrepreneurial fundraising professional who wants to shape the future of precision medicine, create greater equity in healthcare, and grow an organization making a real impact on patients’ lives and working toward the greater good.

Reporting directly to the Founder and CEO, Rich Horgan, the new CAO will partner closely with Rich, a committed and passionate Board of Directors, and one of CRD’s key corporate partners, East River Energy to advance fundraising priorities.

Currently raising around $2.5m to $3m annually, the new CAO is expected to help expand the advancement program and triple revenue in the next 3-5 years.  The right candidate will have a strong desire to see  a change in outcomes within the world of fatal, rare diseases.

The position is fully remote, and the candidate should be willing to travel as needed, around 20% of the time. While a remote role, candidates residing in the Northeast are preferred and will be prioritized.   

Key Responsibilities

  • In partnership and collaboration with the Founder and CEO and the Board of Directors, develop and implement short- and long-term advancement plans to meet advancement goals and objectives to triple revenues within 3 to 5 years.
  • Build a comprehensive advancement program to create diversified revenue from individuals, corporations, and foundations.
  • Serve as a strategy partner to the Founder and CEO
  • Create systems, policies and practices to support a high-level fundraising program.
  • Work with the Founder and CEO to develop a pipeline of new donor prospects as well as develop the strategy to connect with, solicit and steward new donors annually.
  • Provide leadership for all facets of the advancement team including planning, goal setting, implementation strategies.
  • Manage and a mentor a small team of fundraising professionals while also providing input into future staffing investments.
  • Participate at meetings of the Board and select Board committees to provide advice and counsel, and report on development related issues and operations.
  • Oversee and grow existing 2-3 keystone fundraising events for CRD including its annual golf tournament.
  • Oversee the development of all fundraising materials including pitch decks, presentations and grant requests when needed.

Key Qualifications

  • family of four wearing cure rare disease sweatshirts7+ years’ experience growing fundraising revenue within a non-profit organization.
  • Track record of securing major gifts at the six-figure+ level.
  • Experience building a fundraising program from soup to nuts
  • Ability to operate in a small, fast-paced, remote team and can thrive in fully remote position.
  • High ability to effectively manage processes and projects for multiple priorities in a fast-paced environment.
  • Extensive experience with identifying, cultivating, and stewarding major corporate and individual donors whose focus is supporting the medical research/precision medicine area.
  • Experience managing and growing established fundraising events.
  • Demonstrated ability to handle multiple projects in a fast-paced environment and perform under deadlines and changing schedule.
  • Superb formal writing and organizational skills with a particular strength in relaying information in a concise and persuasive manner.
  • Ability to be a strong team player and willingness to work as part of a small, entrepreneurial team with shared responsibility and accountability and willingness to do whatever work is needed to accomplish the organization’s goals.
  • Desire to transform the paradigm of therapeutic development for rare diseases.
  • Previous experience working in a start-up environment strongly preferred
  • Life sciences non-profit experience is preferred but not required.

Compensation: CRD offers a competitive salary commensurate with experience. A performance bonus is also offered.

DEI Statement: Cure Rare Disease is an equal opportunity employer.

If you are interested in being considered for this search, please use the form below to submit your cover letter and resume in confidence.

Jesse Bryan

Vice President Executive Search

Development Guild DDI

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