Job Description  

Position: Major Grants & Gifts Officer (Full-Time) 

Reports to: President & Chief Executive Officer  

Location: United States, Remote Based 

Salary: $70,000 – $75,000 


Organization Overview 


The Ehlers-Danlos Society is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related symptoms and conditions. We are proudly working to provide global learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population: Giving HOPE to all those whose lives are affected by EDS and HSD. 


Overview of Responsibilities 

The Major Grants & Gifts Officer works closely with President & CEO to identify and manage grant applications and nurture relationships with potential major funding opportunities in both the public, private, and corporate sectors. 
The primary focus is to lead the search for relevant grants and foundations for the organization, from proposal development to submission and management of funds when awarded. 
They will also meet and work with major donors and prospects with significant giving capacity to accomplish their giving objectives in the form of annual giving, major and planned gifts. 
The Major Grants & Gifts Officer will engage in and be responsible for all aspects of the major donor development cycle including donor identification, cultivation, solicitation, acknowledgment, and stewardship. 


Key Responsibilities/Essential Functions 

The major responsibilities of this position include, but are not limited to:  

  • Conduct research on prospective institutional, corporate, and family foundations, as well as established government funding programs, to evaluate grant seeking opportunities.  

  • Collaborate with internal departments to effectively gather information necessary for the development and submission of grant proposals.  

  • Identify major gift prospects; undertaking prospect research to propose, develop, and cultivate prospects for major gifts using a structured, strategic, and measurable approach.  

  • Cultivate major gift prospects, investing the necessary time and energy to build relationships designed to understand the donor/prospect goals with the expressed purpose of alignment with the Society’s mission and objectives.  

  • Solicit major gift prospects, moving prospective major donors along the donor pipeline ready to receive appropriate asks based upon donor intent and interest.  

  • Stewardship of major gift donors. Develop stewardship strategies that continue the major gift relationship for future gifts and planned giving opportunities.   

  • Execute and report on quarterly/annual fundraising plans, donor solicitations identification, cultivation, campaigns (capital and annual), and stewardship efforts.  

  • Work with the communications department to prepare highly customized proposals for prospective donors, as well as other solicitation materials.  

  • Work collaboratively, under the direction of the President & CEO and collaborate with the Development and Communications team to accomplish individual, team and organization funding goals.   

  • Track prospects and major donor contacts in portfolio using organization tools and tracking methods via Monday™ CRM. Ensure that all major donor information entry, storage, and special requests are recorded accurately and accomplished.   

  • Work with Development Team to maintain accurate and up to date information on major donor finances and provide consistent and timely reports to the President & CEO  

  • Work toward annual fundraising (annual and capital) goals and operating campaigns   

  • Continually review, update, and correct CRM database records for individuals and organizations.   

  • Participate in key, organization-wide dialogues to identify areas of fundraising opportunity across strategic programs. 

  • Perform other duties as assigned.   



Work Environment  

Under normal conditions, this role is a fully remote position, working from home. However, due to the international nature of the Society’s work, staff may require regular travel to company events, meetings, and conferences as well as some weekend work.  



  • Bachelor’s degree, Master's degree and/or CFRE preferred  

  • A minimum of 5 years' experience in major gift fund development with a proven track record of major gift program success – experience in health sector is preferred, but not a requirement  

  • Ability to lead work in a virtual team setting, and work independently   

  • Experience and record of accomplishment in successful grant applications  

  • Detailed and in-depth knowledge of fundraising, it’s impact and relevant tax-laws associated 

  • Experiences of working internationally is desired  

  • Demonstrated success as a relationship builder with superb interpersonal skills, persuasive communication style and ability to articulate our mission in an impactful manner. 

  • Excellent verbal and written communication aptitude  

  • Ability to think strategically, multi‐task and meet deadlines.  

  • Ability to determine how best to develop and maintain effective relationships with donors and determine when and how a prospective donor can be successfully solicited for a gift/gifts   

  • Demonstrated ability to understand the needs and interests of donors in order to develop/strengthen relationships  

  • Established current relationships with HNW individuals and organizations 

  • Ability to participate in all aspects of the giving cycle   

  • Must have knowledge of planned giving techniques and vehicles   

  • Ability to work evenings and weekends to prepare for and attend Society events.  

  • Ability to compile and present clear and effective reports to all levels of stakeholders, both internally and externally.  

  • Proficient in using Microsoft Office applications (Outlook, Word, Excel, PowerPoint). 


Diversity Statement     

The Ehlers-Danlos Society’s commitment to diversity and inclusion drives the four pillars of our mission forward: research, education, advocacy and support, and awareness. We are a global, multicultural organization, as such we seek to increase opportunities for individuals of diversified backgrounds and are committed to building an inclusive culture that celebrates the diverse voices in our team and community. The Ehlers-Danlos Society actively recruits, employs, trains, compensates and promotes opportunities regardless of race, religion, color, national origin, sex, disability, age, veteran status, and other protected status as required by applicable law.   

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