Emily’s Entourage

Director of Operations

THE ORGANIZATION

Emily’s Entourage (EE) is an innovative nonprofit that raises funds to accelerate lifesaving research and drug development for individuals with rare nonsense mutations of cystic fibrosis (CF), a fatal genetic disease primarily affecting the lungs and digestive system. Founded by Emily Kramer-Golinkoff, a woman with advanced-stage CF, and her friends and family, the organization’s work supports research initiatives at some of the world’s leading academic medical institutions and promising companies while also cultivating multi-stakeholder collaborations and facilitating information exchange to speed treatment breakthroughs and identify a cure. Since 2011, Emily’s Entourage has awarded millions of dollars in research grants, launched a CF gene therapy company that has been acquired by a large pharmaceutical company, developed a matchmaking program to speed clinical trial recruitment, and led worldwide efforts to drive high-impact research and drug development. 

 

Today, the work funded by Emily’s Entourage is particularly critical. While revolutionary breakthroughs in treatments are available for 90% of the CF population, 10% of the CF population, including those with nonsense mutations, have yet to benefit from recent mutation-targeted advances in CF treatment. Research spearheaded by EE may have applications far beyond the CF community since nonsense mutations cause approximately 12% of all genetic diseases, affecting roughly 30 million people worldwide. Progress made identifying effective treatments for nonsense mutations of CF may have broader implications for patients suffering from other genetic diseases, including certain types of muscular dystrophy, inherited blood disorders, and cancers. 

 

With guidance from its Scientific Advisory Board, EE has established strategic research priorities to guide its targeted financial investments in research projects with the greatest potential for near- and mid-term impact. This results-oriented approach to expedite research is paradigm-shifting and a sharp departure from the norm, where the scientific community drives research direction and progress can be slow, fragmented and inefficient. In addition to its research agenda, Emily’s Entourage also created and maintains a clinical trial matchmaking program utilizing its registry of individuals with nonsense mutations of CF to connect individuals with potentially relevant clinical trials and speed the clinical trial recruitment process. 

 

Emily’s Entourage has been featured in The New York Times, STAT, CNN, theSkimm, People, and more. Emily was named a “Champion of Change” for President Obama’s Precision Medicine Initiative and is the recipient of the 2016 Global Genes Rare Champion of Hope for Advocacy Award and the 2020 Philadelphia Magazine Luminary Award.

THE POSITION

Emily’s Entourage seeks an experienced, entrepreneurial, and passionate Director of Operations to organize and oversee its daily operations and advance its strategic initiatives. Reporting to the organization’s co-founders, the Director of Operations will plan, implement, manage and monitor day-to-day business, fundraising, and programming operations to maximize the organization’s success, efficiency and growth. In collaboration with the organization’s co-founders, other team members, and strategic advisors, the Director will oversee internal operations and administrative functions, including hiring, training, and managing staff; cultivating and managing vendors and volunteers; and providing oversight to marketing and communications, fundraising/events, data management, finance and regulatory compliance, and development operations.  

 

The Director’s responsibilities are broad and diverse and will evolve as the organization grows and new strategic initiatives are identified. They must have the ability and desire to learn quickly, multitask and manage a variety of operational activities, processes and priorities. The Director will be a self-starter with excellent communication, leadership, and organizational skills and the ability to identify operational and program efficiencies to drive the organization’s success.  

 

The Director of Operations joins a core team of six, including a recently hired Chief Scientific Officer, Manager of Fundraising and Events, Director of Strategic Partnerships, Director of Marketing and Communications, and contracted Data Manager. 

RESPONSIBILITIES

Operations, Logistics and Administration 

 

  • Work collaboratively with leadership to create and implement strategies that impact the organization’s future growth and direction

  • Provide operational and administrative oversight for EE’s fundraising and community outreach activities 

  • Ensure program quality, budget, and timeline adherence, including the research grant program, clinical trial matchmaking program, advocacy and regulatory efforts, and others as needed

  • Ensure staff priorities are set and delivered: lead weekly staff meetings, set agendas, oversee timelines, etc.

  • Ensure administrative functions run effectively and efficiently through regular and continuous improvement of internal systems 

  • Review and manage all contracts, legal documents, and agreements in conjunction with co-founders, the board of directors and strategic advisors, and legal counsel

  • Oversee IT activities, including identifying, managing and evaluating vendors and platforms

  • Manage and mitigate risk by maintaining adequate insurance for the organization

  • Work with colleagues to design, implement and evaluate fundraising initiatives; oversee protocols and process to involve the CF community and strategic advisors in fundraising

 

Human Resources and Management

 

  • Oversee recruitment, hiring, and training of new staff and design and implement an onboarding program for new hires 

  • Manage and support the Manager of Fundraising and Events, Director of Marketing and Communications, Database Manager and numerous contractors

  • Administer and oversee the organization’s employee benefits program

  • Ensure optimal and efficient use of technology and equipment, facilitating training as needed; with co-founders, refine the vision and strategy for the use of technology and data to improve operations. Manage the budget and purchasing for technology (hardware, software and support) and office and program supplies/equipment. 

  • As appropriate, oversee use of office space/logistics (for in person work or other activities)

 

External Relationship Development

 

  • Develop and oversee relationships with vendors, contractors, and service providers

  • Promote positive relationships with donors, board members and other volunteers. Provide administrative support for meetings including agenda prep, materials and follow up. 

  • Assist in recruiting, orienting and stewarding volunteers; oversee processes to ensure efficient and responsive volunteer management

 

Financial Management and Regulatory Compliance 

 

  • Lead and coordinate work with outside accounting and bookkeeping firms 

  • Prepare, review, and analyze financial reports with support from CPA and co-founders

  • Assist in on-time completion of the annual audit and IRS Form 990 return

  • Develop and implement policies and regulatory compliance related to governance, accounting, HR, and other operational matters

  • Support EE’s initiatives involving advocacy and serve as a key liaison on issues of regulatory affairs. Build awareness and collaborative support across government and community-based organizations to advance the mission and work of Emily’s Entourage.
     

Strategic Planning

 

  • Support and advise the co-founders in decision-making and on critical operational issues

  • Work with co-founders to create and update a dynamic long-term strategic plan, ensuring all programs are executed with focus on quality, budget adherence, and timeline

  • Coordinate development of the annual work plan and budget; track and evaluate performance against individual and organizational goals

 

CANDIDATE QUALIFICATIONS

Education:

 

A bachelor's degree is required.

Experience:

 

  • A minimum of five years of professional experience in business operations, nonprofit administration/management or related field 

  • Experience setting operational vision and strategy for an organization including implementing protocols/systems to effect change and improve administrative functions

  • Proven strategic planning and project management skills and the ability to translate strategies from plans to action

  • Experience building and maintaining relationships with a wide array of people, including managing and building internal and external partnerships and coalitions

  • Experience hiring, training, mentoring, and managing teams. Demonstrated leadership experience and ability to motivate and inspire

  • Experience with IT systems and anticipating and adapting technology advances to increase productivity and outcomes

  • Familiarity with medical research or disease-based organizations a plus
     

COMPETENCIES/ATTRIBUTES

The successful professional will have or be:

  • Versatile, flexible and able to juggle priorities simultaneously in a fast-paced environment

    • Strong written and verbal communication skills

  • Strong project management skills. Meticulously organized, detail- and deadline-oriented 

  • Proficient with technology and committed to high quality and style standards 

  • Passionate about advancing medical and scientific research 

  • Deep appreciation for complexities associated with chronic illness; knowledge about issues related to Cystic Fibrosis is a plus but not required

  • Entrepreneurial abilities aligned with building a successful organization

  • Team-oriented player able to communicate and work alongside organization leadership and staff, as well as board members, volunteers, and external community

  • Integrity, credibility and a commitment to and passion for EE’s mission

  • Familiarity with a broad range of HR policies, functions, and leading practices

  • Strong interpersonal skills and the emotional intelligence and the ability to build and broker relationships to promote a culture of self-start and accountability

  • Energetic, flexible, collaborative, and proactive; a team leader who can positively and productively direct both strategic and tactical initiatives
     

COMPENSATION AND BENEFITS
 

A competitive salary and generous employee benefits package will be offered. To be considered for this position or for additional information about the opportunity, please send a resume and cover letter to or contact: 


David N. Randall

Principal

Randall Search Associates

415 769 4210

david@randallsearchassociates.com

Emily’s Entourage provides equal employment opportunity to all persons regardless of age, race, color, religion, national origin, gender, sexual orientation, marital status or disability.