Executive Director, Smith Magenis Syndrome Research Foundation

Opportunity 

The SMS Research Foundation (“SMSRF”) seeks a strategic and forward-thinking executive director to lead a dynamic foundation that strives to advance scientific research resulting in innovative treatment options for people living with Smith-Magenis Syndrome (“SMS”). SMS is a complex development disorder arising from a microdeletion or a mutation of the 17thchromosome that affects multiple organ systems of the body. The disorder is characterized by a pattern of abnormalities that are present at birth (congenital) and result in behavioral and cognitive problems for individuals living with SMS.  

The SMSRF is the leading international organization promoting and funding SMS research. Currently, the SMSRF has engaged world-class institutions such as the Yale University, McGill University, and the Baylor College of Medicine to conduct groundbreaking research aimed at developing treatment options to vastly improve the lives of those living with SMS.  

The SMSRF seeks an executive director to successfully advance the organization’s mission by leading its core fundraising, advocacy, and strategic planning initiatives as developed in coordination with SMSRF’s Board of Directors. The executive director has primary responsibility for executing these initiates by cultivating and expanding donor relations, developing fundraising initiatives, researching and applying for appropriate grants, increasing awareness of SMSRF, and administering the origination’s day-to-day activities, including its budget.  

The position is attractive to any candidate who wishes to work remotely within the United States, as relocation is not required. The position is currently supported by a 50% administrative staff member. The successful candidate need not have a scientific background, as the organization has a Scientific Advisory Panel (“SAP”). The SAP is comprised of both basic science and clinical experts in rare diseases and genetics who direct and supervise the scientific endeavors of SMSRF.  

A successful candidate for the executive director position: 

• is excited about the opportunity to work with individuals, donors, and research institutions to increase fundraising and further the organization’s core mission; and 

• is a self-starter and strong leader who is committed to bettering the lives of individuals living with a challenging genetic syndrome; and 

• is compassionate, trustworthy, collaborative, optimistic, and acts with a high degree of integrity in representing the organization.      

Core Responsibilities: 

• Fundraising: Oversees, improves, and expands current fundraising activities. In coordination with the Board of Directors, develops and maintains relationships with existing and potential donors. Establishes strategies to meet and exceed the organization’s annual revenue targets. Identifies and seeks grants from local, state and national foundations. Initiates and builds diverse and sustainable revenue streams, including corporate partnerships, matching contributions, retail campaigns, and major gifts.   

• Leadership: Serves as the primary representative for organizational activities. Inspires confidence in the foundation’s mission and activities. Works closely with the Board of Directors to implement the strategic plan. Meets weekly with the Board President to review the day-to-day operation of the organization and discuss priorities. Meets monthly with the Board of Directors to review strategic initiatives, organization financials, and provide updates.  

• Strategic Operations: Responsible for the overall operations of SMSRF. Manages activities of the organization, including, but not limited to, developing and monitoring the annual budget, maintaining development records, and overseeing and implementing short- and long-term planning, all in collaboration with the Board of Directors. 

• Advocacy and Awareness: Serves as Foundation spokesperson. Increases awareness of SMS and SMSRF. Communicates with health professionals, legislators and their staffs. Builds relationships with other advocacy groups. 

• Administrative: Supports Board of Directors and committees. Ensures ethical and best practices in all SMSRF activities. 

Experience And Qualifications: 

Successful candidates must have proven fundraising, leadership and operational skills along with a record of working independently. Additional qualifications include: 

• Bachelor ’s degree  
• Experience: Minimum of 2 to 5 years’ experience in non- profit development and management. 
• Independence: Ability to work proactively and without direct supervision. 
• Adaptability: Desire to work within a culture that is fluid. Motivated to learn, explore and research areas of need that may fall outside past experience or expertise. 
• Process-driven: Capacity to build infrastructure, formalize informal processes, organize and manage projects from start to finish, and identify process details and gaps. 
• Communicative: Strong written communication. Talent to distill complex concepts into actionable information, speak clearly and work collaboratively with Board and key audiences. An understanding and appreciation of the need to keep various constituents informed.   
• Detail-oriented: Highly detail-oriented with excellent organizational skills and a critical degree of accuracy regarding project deliverables. 
• Project management: Ability to manage multiple projects simultaneously. Strong with follow-up and seeing projects through to completion. 

Additional, not required: 

• Research: Expands interest in SMSRF’s efforts in the medical and scientific communities, build relationships with research, diagnostic and pharmaceutical sectors. Organizes research meetings and regularly shares research related news in a family-friendly manner with the SMS community, with the support of and in partnership with the Board of Directors and the SAP. 

Compensation 

• Annual salary, exempt position 
• Health insurance 

• Paid Time Off 
• Standard holidays 
• Flexible work schedule  
• Remote position, can be done from any location in the US (ignore the work location/state/zip; it was required by the posting form)

Company: SMS Research Foundation, www.smsrearchfoundation.org 

Position: Executive Director 

Location: U.S.-Based, limited travel. 

The Executive Director will work remotely from their current location.  Re-location is not required. 

Hours: Full time, exempt employee 

Salary: $75,000 plus benefits  

Contact Hiring@smsresearchfoundation.org 

If interested, please submit resume and cover letter to hiring@smsresearchfoundation.org.