Director of Development (Global Rare Disease Nonprofit)

Title: Director of Development

Location: United States

Organization’s Mission: To fund research to find a cure for FOP while supporting, connecting, and advocating for individuals with FOP and their families, and raising awareness worldwide.

About the Organization: The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is the leading international nonprofit organization dedicated to accelerating fibrodysplasia ossificans progressiva (FOP) research initiatives and supporting those impacted by the ultra-rare genetic disease. A volunteer board of directors governs the IFOPA. We hold ourselves accountable to the FOP community. As an organization, we work closely with patients and families, national FOP organizations around the world, and leading clinicians, scientists, and drug developers.

Position Overview: The Director of Development is responsible for the fundraising efforts of the IFOPA. This role reports to the Executive Director and interacts collaboratively with the IFOPA’s donors, staff, Board of Directors, committee members, and fundraisers. The Director’s primary responsibility is oversight of all fundraising operations (e.g. annual appeal, major donors, community fundraisers) to meet or exceed the organization’s annual revenue budget while adhering to the expense budget. Expanding existing sources of revenue while identifying and securing new revenue to meet or exceed goals is a key role of this position. The Director of Development works cross-functionally with other staff members to align fundraising efforts with organizational objectives. To articulate the need for organizational support, the Director stays apprised of all current IFOPA research projects, family services programs and activities, and awareness and advocacy campaigns.

Ideal candidates should demonstrate proven fundraising success and be ready to drive the process at the IFOPA with innovation, enthusiasm, and initiative.

The Director of Development position is a full-time, exempt position. All IFOPA staff members work remotely from their homes. Travel is required and could consist of up to 5-10 trips per year with the potential for occasional international travel.

Why Work for the IFOPA

The IFOPA offers a rewarding career working for a highly regarded patient advocacy organization in a disease space with significant research and drug development activity. Our staff members like working at the IFOPA because of our mission, work-life balance, benefits, and culture:

• Opportunity for career development in a small, fast-paced, hands-on environment
• Competitive base pay is determined by factors including, but not limited to, relevant work experience, education, etc
• Work in a virtual environment
• Generous paid time off plus holidays
• Joining our dedicated team affords the gratification of knowing beyond a doubt that you will impact the lives of individuals and families living with a devastating, one-in-a-million diagnosis

Salary Range and Benefits: The salary range for this position is $80,000-90,000. The IFOPA provides a generous contribution to health insurance (or employees may opt for a medical waiver allowance if otherwise insured). The IFOPA provides dental and vision insurance, short-term and long-term disability, parental leave, a generous PTO policy, and paid holidays. A stipend is provided for the purchase of home office equipment and there is a monthly stipend for cell and WIFI service.

Responsibilities

The Director of Development works closely with the Executive Director, Operations Director, and Marketing Manager in the execution of all duties. The Program Specialist provides support for development activities.

• Exceed the organization’s annual fundraising revenue budget of $1,500,000+, primarily through major gifts, annual appeals, monthly donors, and community fundraising
• Build and implement the organization’s development plan to complement its strategic plan and annual fundraising budget, with the intent to increase revenue goals annually
• Engage and expand opportunities for existing donors while identifying and securing new sources of support
• Develop and implement a major gift plan, including identifying and researching prospects, and working with the Executive Director to: cultivate relationships with prospects/existing donors; develop recommended gift levels; generate resources for donor calls; solicit gifts; and manage successfully executed solicitations
• Build, develop, and retain strong, positive relationships with donors, Board members, and the FOP community
• Promote and provide support and resources for individuals and families who conduct peer-to-peer fundraising and events
• Enter all development-related interactions in the donor database
• Develop the strategy and execute three annual appeals, including writing copy for letters, emails, and social media
• Develop an annual plan and execute stewardship, growth, and acquisition of monthly donors
• Develop and execute strategy for the growth of legacy gifts
• Administers and markets other fundraising initiatives (e.g. employer match, car donation, etc)
• Maintain the integrity of fundraising practices in accordance with ethical standards
• Work collaboratively with the Program Specialist and Operations Director to process donations, produce acknowledgment letters, update the donor database and website, and produce revenue reports as needed
• Serve as the staff liaison to the Fundraising Committee and recruit non-Board members to serve on the Committee
• Submit written progress reports summarizing development activities for all Board meetings and participate in Board meetings, upon request
• Periodically conduct a comprehensive evaluation of development initiatives’ success against established goals with recommendations for adjustments if needed

Key Qualifications

• Prefer a Bachelor’s degree; MPA or nonprofit credentials (CFRE, ACFRE, or CNP) a plus
• Experience in rare disease patient advocacy preferred
• At least 5 years of experience as a proven, successful fundraiser in a variety of channels including annual fund, major gifts, events, and peer-to-peer fundraising
• Track record of successful donor cultivation, gift solicitation, and stewardship
• Driven and with strong initiative to reach/exceed fundraising goals
• Possess superior organizational and project management skills to meet internal and external deadlines
• Efficiently manage multiple projects with competing priorities
• Strong verbal communication skills with a proven ability to write clearly and persuasively
• Ability to recruit and manage volunteer committee members
• Demonstrated success working independently or cross-functionally with other team members, Board, and committee members
• Expertise working in a CRM database
• Comfortable with web-based project management tools and collaboration technologies
• Ability to work well in a team environment and independently in a virtual setting
• Thrives in a fast-paced, dynamic environment
• Must have a willingness to work flexible hours and travel as requested
• Proficient in Microsoft Office (Word, Excel, and PowerPoint) and Google Workspace

Other Duties: This job description is not designed to contain a comprehensive listing of activities, duties, or responsibilities to be performed by the jobholder. The Director of Development will be required to follow instructions and perform other duties as requested by the Executive Director. Essential elements may change when necessary.

To Apply: Submit a resume, cover letter outlining your qualifications and interest in the role, and three references to careers@ifopa.org. Deadline to apply is February 1, 2025.

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The IFOPA is an equal employment opportunity employer and strives to comply with all applicable laws prohibiting discrimination based on race, color, creed, sex, age, national origin or ancestry, physical or mental disability, veteran status, marital status, etc., as well as any other category protected by federal, state, or local laws.