Donor Relations & Digital Coordinator

Donor Relations & Digital Coordinator

The International Fibrodysplasia Ossificans Progressiva Association (General)
Kansas City, MO 64108
April 11, 2019
Full Time Position
Job Description: 

Description of Organization: The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is an international nonprofit organization fostering medical research and providing education and support for those afflicted by the rare genetic condition fibrodysplasia ossificans progressiva (FOP). The IFOPA’s mission is 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. A volunteer board of directors, which may range in number from 9 to 15, most of whom have FOP or a child/grandchild with FOP, governs the IFOPA. We hold ourselves accountable to the FOP community. As an organization, we work closely with patients and families, national FOP organizations, leading clinicians, scientists and drug developers. 

Hours, Supervision and the IFOPA Office: This full-time position reports to the Executive Director. All IFOPA staff members work remotely from their homes. The Donor Relations & Digital Coordinator will meet at least once a week with the Executive Director and once a month with both the staff team and communications support team. 

Position Overview: The IFOPA is seeking a highly motivated and passionate individual with interest in and experience serving a nonprofit organization. The position will focus on providing support to the Executive Director and Board and managing digital communications with and for stakeholders including patients and families, clinicians and researchers, and donors and fundraisers. The successful candidate will have experience in digital communications and donor relations, pays attention to details, can manage several projects at once, can self-manage daily tasks and maintains a strong customer service focus.

  • BS/BA degree preferred 
  • Nonprofit experience required 
  • Relevant experience in donor relations and digital communications 
  • Strong project management and general organizational skills 
  • Ability to work independently and effectively in a virtual setting 
  • Excellent attention to detail, strong written and verbal communication skills 
  • Expertise with Microsoft Office (Word, Excel, and PowerPoint) and Google for Nonprofits 
Job Responsibilities: 

Digital Communications 

  • Participate in monthly strategy sessions on digital communications and social media 
  • Coordinate and publish social media content (to include, but not limited to, Facebook, Instagram, Twitter, LinkedIn, Pinterest); skill and ability to write content preferred 
  • Coordinate and publish two eNewsletters and a variety of mass emails; skill and ability to write content preferred 
  • Monitor the organization’s general email and social media and respond or route, as necessary, to appropriate staff 
  • Make updates to the website and fundraising pages 
  • Build and maintain an IFOPA media list 

Gift Administration and Donor Relations 

  • Do all offline gift entry, including gifts-in-kind 
  • Prepare all thank you letters, including in-kind donations and coordinate mailing with printer 
  • Prepare monthly in honor/memory reports and update family web pages 
  • Prepare annual contribution statement and coordinate mailing with printer 
  • Maintain Salsa CRM database, including repermission campaign and data clean-up, weekly upload of outside data 
  • Run reports and prepare cultivation and stewardship materials (birthday cards, thank you notes, call lists, etc) 

Meeting Support 

  • Coordinate event logistics, including air travel and ground transportation, hotel reservations, food and beverage, audio-visual, etc and prepare materials for the annual IFOPA Board meeting 
  • Work with staff and committee chairs to schedule and manage Board and committee meetings 
  • Collect and file Board and committee minutes and materials electronically 
  • Travel to and assist with staffing of IFOPA-led meetings, including but not limited to, FOP Family Gathering and Drug Development Forum 


  • Track volunteer hours for the organization 
  • Manage IFOPA Store 
  • Purchase items granted through the Kaplan Quality of L.I.F.E. Awards program 
  • Coordinate production and shipping of awards for the Jeannie Peeper Awards 
  • Work with vendor to fulfill requests for FOP awareness materials 
More Info: 

The IFOPA is committed to creating a diverse environment and is proud to be an equal employment opportunity employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status, as well as any other category protected by federal, state, or local laws. 

The job profile in no way states or implied that these are the only duties to be performed by the jobholder; the Donor Relations & Digital Coordinator will be required to follow instructions and perform other duties as requested by the Executive Director. Essential elements may change when necessary. 

To apply, please send your resume along with a cover letter and salary requirements to Michelle Davis, Executive Director, at by April 22.