The Fibrous Dysplasia Foundation is currently welcoming applications for the position of:
- Executive Director
- Registry Program Intern (Summer 2019, Fall 2019, Spring 2020)
About the Executive Director Postion:
The Executive Director serves the FD/MAS patient community by providing visionary leadership, strengthening the organization’s relationships with key domestic and international stakeholders, and overseeing high-quality execution of program, fundraising and administrative operations. The Executive Director must be passionate about accelerating progress across multiple domains (e.g. research, education, awareness, support) for a community with a serious unmet medical needs, and complex unmet social needs. The Executive Director is responsible for the effective management of the small but talented staff of the Fibrous Dysplasia Foundation, and is the primary strategic and operational lead on fundraising activities and network building activities. Top candidates for the Executive Director role will have the ambition, vision and skills to continue the organization’s strong revenue growth trajectory ((2015) $39,484; (2016) $89,465, (2017) $207,978; (2018) $368,061), and lead the Fibrous Dysplasia Foundation through the next phase of transformative growth.
The duties listed illustrate various types of work that may be performed but are not intended to be a final statement of work.
Coalition and Relationship Building (15%)
- Skillful, continuous relationship building with new and existing allies in the fight against FD/MAS. Methodically and strategically engineer pipelines to grow the network of allies and deepen existing bonds, including among potential and existing funders, partner organizations, board members, researchers, legislative offices, life science sector companies, interns, skilled volunteers, and influencers
- Talented advocate for the FD/MAS community in the US and abroad, who is able to identify, mentor, support and cultivate other advocates with potential to make a difference.
- Develop and execute annual and multi-year fundraising plans to drive growth of the organization. Plans expected to include:
- Cultivation/recruitment, support and retention of community-led fundraising (in-person events, digital, and hybrid)
- Individual giving campaigns and programs, including prospecting, cultivation and stewardship of new and existing major donors
- Growth plans for foundation and corporate grant income
- Develop other, new revenue generation strategies
- Represent the Fibrous Dysplasia Foundation in formal and informal coalitions through which the organization conducts programming or achieves organizational objectives
- Manage the Fibrous Dysplasia Foundation’s Community Programs Manager and Research Programs Manager to collaboratively develop, refine, and evaluate a diverse set of programs in support of the FD/MAS community in keeping with nonprofit best practices. Current programs include:
- Research grants for scientific projects
- An IRB (Institutional Review Board) approved patient registry program
- An international research consortium with annual meetings
- Biannual educational meetings for patients and parents
- Other educational programming, including providing 1-on-1 responses to community inquiries for assistance, and web and video resources
- Engaging, inspiring supporter updates across various communications channels and mediums
- Disease and brand awareness initiatives
- Initiatives to improve clinical care of FD/MAS patients, and help FD/MAS patients find adequate clinical care
- Support programming to address isolation, being misunderstood, and other feelings commonly found in people living with FD/MAS and their families.
Operations and Administration (30%)
- With the Board of Directors, develop and implement the organization’s next strategic plan
- Oversee the development, implementation and evaluation of annual work plans and budgets
- Effectively communicate status of work plans and finances to the Board of Directors
- Oversee part-time bookkeeper, and collaborate with the board Treasurer, to ensure accurate financial recordkeeping, adequate financial controls, and timely and accurate tax and regulatory filings.
- Develop and document organizational standard operating procedures and policies
- Manage complete annual performance evaluations and other basic HR functions like development and implementation of company policies for incurring expenses, scheduling work/time off, etc.
- Bachelor’s degree or higher. Relevant degree preferred, e.g. nonprofit management or science/public health discipline.
- Minimum 5 years experience in the nonprofit sector, with experience at a patient organization, medical society, voluntary health organization, or similar organization, and experience that included major fundraising responsibilities.
- Highly motivated, entrepreneurial self-starter with an infectious “can-do” attitude.
- Strong ability to establish and maintain positive and effective working relationships.
- Track record of achieving fundraising growth, preferably across multiple types of fundraising programs (e.g. demonstrable major donor fundraising success AND demonstrable foundation grant cultivation success)
- CRFE (Certified Fund Raising Executive) certification, AFP (Association for Fundraising Professionals) membership, or similar is highly desirable
- Able to thrive in a work from home context, managing a remote team. This includes a high level of computer literacy.
- Experience managing multiple concurrent projects and programs.
- Strong strategic thinking, problem-solving and prioritization.
- Skilled communicator: able to explain complex concepts clearly, while tailoring the delivery of information to diverse audiences.
- Familiar with public health issues that commonly impact rare disease communities
- Management experience preferred
- A personal connection to fibrous dysplasia, McCune-Albright syndrome, or other rare disease is a plus but not necessary.
Basic position details:
- Must be based in the US, and authorized to work in the US
- 40 hours per week/full-time. Not eligible for overtime. Typical business hours, with moderate accommodations are possible. There are occasional weekend/evening obligations.
- Physical requirements include computer work for long periods of time.
- Occasional domestic and international travel (approximately 10% a year, depending on candidate location).
- Salary range is $55,000-$75,000, depending on qualifications and geographic location.
- Benefits to include paid federal holidays, workers compensation coverage, short-term and long-term disability insurance, life insurance, and 15 days paid leave per year. 401K and health benefits not included at this time, but under consideration.
Please send your resume and cover letter to firstname.lastname@example.org.
- Use the subject line: Executive Director Application.
- In your cover letter, include the following information: How has your personal and professional background prepared you for this position? Please highlight how you would meet or exceed expectations for the specific responsibilities listed in this job description. Include at least one quantitative metric that illustrates your ability to grow a fundraising stream.
Applications will be considered on a rolling basis until the position is filled. Candidates are encouraged to apply as early as possible.
FDF has a non-discrimination policy and encourages all interested and qualified applicants to apply regardless of race, gender, sexual orientation, gender identity, religion, age, disability or other status protected by applicable law.
About the Registry Intern Position:
The Fibrous Dysplasia Foundation is a unique nonprofit that serves the needs of people with fibrous dysplasia, McCune-Albright syndrome (FD/MAS), cherubism and related diseases through programs of research, education and support. FD/MAS is a poorly understood disease that affects the bone, endocrine system and skin.
The FD/MAS Patient Registry is an exciting and innovative research program that allows patients affected by this rare disease to share their medical history and personal experiences in order to accelerate research. While the project only opened enrollment in 2016, the FD/MAS Patient Registry is already one of the most valuable FD/MAS datasets worldwide.
The Research Intern will gain valuable experience in survey-based health research by facilitating FD/MAS Patient Registry participant enrollment, participant retention, data analysis, and community engagement.
This is a part-time (between 10 and 20 hours per week), unpaid, remote internship opportunity, although candidates in the Washington, DC area will have the opportunity to meet with staff in-person.
- Candidate must be able to schedule at least 10 hours a week during business hours (between the hours of 9am and 6pm EST, Monday – Friday).
- Candidate must be able to receive academic credit for the internship.
- Assist families who are interested in joining the patient registry by accurately answering basic questions about the project over email, phone and social media.
- Helpfully guide patients and families through the study enrollment process, and reporting any problems or recurring questions to supervisors.
- Encourage study participants to complete or update their scheduled study responses in a positive and professional manner.
- Conduct data analysis to answer FD/MAS research questions.
- Work with FDF staff to disseminate study findings to study participants by presenting that information in an easy to comprehend manner.
- Work with FDF to strategize and plan upcoming community outreach campaigns about the FD/MAS Patient Registry.
- Additional tasks as requested.
- Pursuing a bachelor’s degree in a relevant major, such as public health, biology, information systems or sociology.
- Previous experience as a research assistant is a major plus.
- Previous work or volunteer experience at a health condition centric nonprofit or a medical environment is a major plus.
- Must be excited to learn and use web-based applications they haven’t used in the past.
- Experience conducting data analysis in Excel or a more powerful data analysis tool.
- Candidate should have a high level of computer literacy, including ability to conduct internet research, and confidence using Google Apps, Dropbox, Skype, Word, and Excel.
- Given the remote nature of the position, candidates should be self-motivated and able to work independently.
- Empathy, sensitivity and professionalism are essential. You must be able to handle and protect confidential and sensitive information with integrity.
- Excellent communications skills, including firm mastery of spelling, grammar, and punctuation.
- Strong interest in health research and in improving the lives of people with chronic illness.
- Personal connection to fibrous dysplasia, McCune-Albright syndrome, cherubism, or a related rare bone disease is a plus.
There is a rolling deadline for the internship program.
- Applicants for Fall Semester should apply by July 15th
- Applicants for Spring Semester should apply by October 15th
- Applicants for Summer should apply by April 15th
Your university likely has independent deadlines in order for you to receive credit for your internship (required). Contact your internship coordinator as soon as you become interested in this internship in order to learn those deadlines.
Please send your resume and cover letter to email@example.com. Please use the subject line: FD/MAS Research Intern.