Vice President of Development

ORGANIZATION: EB Research Partnership

POSITION: VP of Development

REPORTS TO: Chief Executive Officer 

LOCATION: New York, NY

INFORMATION: www.ebresearch.org 

TO APPLY: Please send resume and cover letter to careers@ebresearch.org

BACKGROUND 

Founded by a dedicated group of parents and Jill and Eddie Vedder (Pearl Jam), EB Research Partnership is the largest nonprofit in the world dedicated to funding research to treat and cure Epidermolysis Bullosa (EB), a group of devastating and life-threatening genetic skin disorders that affect children from birth. 

EB Research Partnership utilizes an innovative business model of venture philanthropy (https://www.ebresearch.org/venture-philanthropy.html); when EB Research Partnership makes a grant to a research project, any revenue from a commercially successful therapy or product is then directed back to the organization to fund additional research. While EB Research Partnership seeks to cure EB, their model for venture philanthropy also serves to help treat and cure other rare diseases along the way. Every dollar raised impacts research on EB and has the potential to impact other rare diseases, affecting 350 million people worldwide.  

Join EB Research Partnership (EBRP) and be part of a transformative journey:

• $60M donated to EB research
• 120+ innovative research projects funded across 20 countries.
• Clinical trials increased from 2 to 40+ including achieving the first 2 FDA approved treatments in 2023. .
• 5 new companies formed to advance treatments.
• Recognized by Harvard Business School, MIT, and Yale University.
• Led by a board of business executives, sector leaders, and philanthropists.
• Aim to cure EB by 2030.

Read more about our groundbreaking work on our press and videos pages.

Press: https://www.ebresearch.org/press.html

Videos: https://www.ebresearch.org/videos.html

POSITION 

EB Research Partnership seeks an entrepreneurial, dynamic, and driven VP of Development to continue to grow and diversify annual revenue from all sources. Alongside a strong and startup-minded team, The VP of Development will be charged with leading and growing the development team and fundraising functions within EB Research Partnership. This senior leader will report to the CEO, and work closely with the board (especially the chair) and volunteers.

RESPONSIBILITIES

Leadership and Strategy 

• Develop and execute a strategic, comprehensive fundraising and marketing plan to transform the organization to a major gift fundraising organization with an overall goal to abolish EB by 2030 with embedded fundraising and operating partners.
• Alongside the CEO, set clear, ambitious execution goals for the team and board.
• Manage weekly and monthly KPIs to meet annual goals.
• Collaborate with the Development team to research and complete key private family and corporate grant applications.
• Work closely with the CEO and team to formulate strong and compelling messaging through presentations, proposals, grants, impact reports, website, and social media.
• Work closely with the board to identify, cultivate, solicit, and steward current and potential donors, with a particular focus on strengthening the outreach and engagement of major donors with an emphasis on six - eight figure gifts.
• Serve as a frontline fundraiser as well as a key partner to the CEO in making asks, cultivating donors, and identifying new prospects. 
• In partnership with the board chair and the CEO, develop a strong relationship with the board, harnessing their energy and enthusiasm for maximum fundraising and board development impact. 
• Enhance existing systems and processes to support increased development activities where needed. Support national EB Research Partnership-led signature special events and community-organized events. 
• Build new development programs, leveraging opportunities for planned giving, annual fund, social media, cause marketing, and community events.

Data and Metrics

• Use data strategically to inform decisions to increase donor retention, prime the new donor pipeline, and upgrade donors.
• Regularly track progress toward fundraising goals across all revenue streams (individuals, foundations, corporations, and board members) in partnership with the finance team, CEO, and development staff.
• Maintain data integrity and use donor data to understand donor habits and behavior.

Leadership

• Be an inspiring and motivating leader for the development team, ensuring that they are involved in setting clear, ambitious goals and have the tools and support to meet them. 
• Foster a culture of continuous improvement, collaboration, and excellence aligned with the mission and values of EB Research Partnership.
• Recruit, develop, and retain a best-in-class team to achieve ambitious goals.
• Ensure staff are establishing detailed, effective plans to reach both their fundraising and personal development goals.

QUALIFICATIONS 

• A passion for EBRP’s mission 
• Experience as a frontline fundraiser with a proven track record of cultivating, soliciting, closing, and stewarding six to seven-figure+ gifts.
• At least two years of experience in fundraising or a related field, preferably in healthcare or children’s cause organizations.
• A creative, entrepreneurial, and strategic mindset with the skills and experiences necessary to build upon existing systems and create new ones as needed in order to broaden and improve the development function.
• Sophisticated personal presence, superior interpersonal skills, and a high level of emotional intelligence, with a proven ability to successfully engage with a variety of stakeholders, ranging from high-profile and high-net-worth individuals to families who are living with EB.
• Capital campaign, annual fund, leadership, and board management experience. 
• The ability to engage in long-range, data-driven planning within a fast-paced, dynamic environment.
• Availability to travel up to 20% annually, primarily within the U.S., with occasional international travel. Some evening and weekend work at special events is required.
• Experience with CRM tools and operating systems; Raiser’s Edge preferred.
• Excellent written and verbal communication skills.
• Bachelor’s degree required; advanced degree or relevant certification preferred.

EB Research Partnership is an Equal Opportunity Employer and does not discriminate on the basis of age, color, national origin, ethnic origin, citizenship status, disability, race, religion, creed, gender, sex, sexual orientation, gender identity and/or expression, marital status, veteran status, or any other characteristic protected by federal, state, or local law in its employment policies. In addition, EB Research Partnership will provide reasonable accommodations for qualified individuals with disabilities.