Chief Development Officer (CDO) - full time virtual nonprofit for rare disease medical research

ASXL Rare Research Endowment Foundation
Maine, United States
Not specified
Oct 13, 2020
Nov 11, 2020
Health, Research
Employment Type
Full Time

Position:  AЯRE Chief Development Officer

Summary of Goals:

AЯRE is a small non-profit (<$5 million) staffed by volunteers. The Chief Development Officer (CDO) will be the first paid position (40 hours per week), and it is funded for two years. Sustainability of the position is dependent on reaching fundraising goals. 

The CDO will strive to diversify the funding portfolio with major gifts from new sources that align with AЯRE’s mission and values while minimizing the cost per dollar raised. The CDO will build relationships, benchmark organizations, and leverage the scale in the rare disease community and with major hospitals, corporations, and industry.   

This employee position will also design and implement marketing campaigns and outreach programs; manage and coordinate the annual fund campaign; and plan for an annual conference with volunteer assistance.  The desired outcome is to significantly increase/improve YoY metrics and drive growth & sustainability for the organization.  In addition, the CDO will improve organizational governance, information accessibility, patient group collaboration, and diversity for AЯRE.

The CDO’s first objective is to revise the strategic development plans and propose an annual detailed operating budget.

This position will be based remotely (preferably in the United States), and no travel is expected while the pandemic remains a national concern; however, some travel will be required when the AЯRE board of directors agrees it is safe to do so. 


AЯRE Foundation:

AЯRE is a small non-profit foundation that supports medical research to increase understanding of ASXL genes and to improve the treatment and management of individuals with congenital ASXL syndromes. The foundation is seeking a development officer who is passionate about our cause and who will drive the advancement of the foundation by supporting short-term and long-term strategic goals though detailed planning, fundraising, and execution. The Chief Development Office will work under the supervision and guidance of the board of directors, including but not limited to leading the foundation’s efforts to identify and to recruit significant financial support through growing and fostering relationships, marketing, and project management.  


CDO Responsibilities:


·       Identify and foster relationships with stakeholders, prospective and current donors, and families through campaigns, conferences, and outreach programs. 

·       Meet targeted campaign goals 

·       Cultivate overall awareness of ASXL syndromes, early diagnosis, ongoing research, treatments, and therapies

·       Develop strategies to increase AЯRE’s effectiveness with grants, strategic partnerships, and  participation of medical doctors and communities in research 

·       Build a strategic donor relations program to support the financial development objectives of the program while recognizing and rewarding our donors


·       Design and implement annual marketing campaigns and outreach programs

·       Write and manage inbound and outbound communications, planning documents, and campaign materials 

·       Cultivate awareness and community by increasing and nurturing the foundation’s social media presence across appropriate platforms 

·       Measure and analyze effectiveness of campaigns through data

Project Management:

·       Plan and manage an annual conference  

·       Manage fundraising campaigns from inception to completion and measure results

·       Prepare and report on strategic plans, progress toward goals, budgets, and resources required



·       Bachelor’s degree in non-profit management, marketing, management or other related fields

·       Minimum of 5-7 years related experience and proven track record of meeting fundraising goals

·       Experience in working for non-profits agency administration

·       Strong project management and oral and written communication skills

·       Proficient in social media marketing

·       Proficient in Microsoft suite of products (Word, PowerPoint, Excel)

·       Skilled at networking and ability to develop and maintain strong professional relationships

·       Self-starter and entrepreneurial spirit

·       Experience managing budgets

·       Ability to measure and report fundraising effectiveness through data 

·       Experience writing grant proposals

·       Ability to travel when required


About AЯRE:

Our Mission: To drive evidence-based research and information distribution that will enable AXSL impacted children to have an improved quality of life through three methods:

1.     Prevent: Improve medical and overall management of care through early identification of health risks and optimization of treatments

2.     Improve: Use evidence-based research to justify medical needs, therapies, services, and equipment needs.

3.     Inform: Enable caregivers and providers to be effective advocates


This research allows us to increase our understanding of the ASXL genes and improve the treatment and management of individuals with congenital ASXL syndromes. This research focuses on a random genetic change in ASXL genes that occurs around conception and can affect any person.


We support this mission in through:

·       ASXL Registry & Biobanks: These are foundation tools based on patient data and samples, which researchers will utilize to study and increase our knowledge of these syndromes.

·       Conferences: Bring together professionals and families to deepen our understanding and exchange ideas that will move our mission forward.

·       Research Grants: Effective research will bring an understanding of the underlying mechanisms and potential treatments for ASXL syndromes.  AЯRE will develop a diverse research portfolio that will build on successful studies as well as support innovative investigations with high potential rewards.


Our Values: The AЯRE Foundation team will embody these values and act in the best interests of ASXL affected individuals and their families.

·       Integrity: Conduct operations in a manner that is honest, transparent, and ethical. Demonstrate good stewardship of the resources bequeathed to AЯRE .

·       Respect: Value and listen to all individuals for their diverse backgrounds, experiences, styles, approaches, and ideas.

·       Community: Collaborate with ASXL families, friends, advisors, doctors, scientists, and other partners to build relationships and maximize accomplishments.

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