Director of Marketing and Communications: Emily’s Entourage

Emily’s Entourage (EE) speeds lifesaving research and drug development for individuals in the final 10% of the cystic fibrosis (CF) community that do not benefit from currently available mutation-targeted therapies. Founded by Emily Kramer-Golinkoff with family and friends in 2011, EE has awarded millions of dollars in research grants, launched a now-acquired CF gene therapy company, developed a patient registry and clinical trial matchmaking program to accelerate clinical trial recruitment, and led worldwide efforts to drive high-impact research and drug development.

Since 2011, EE has raised over $13 million, funded 35 research grants at top institutions worldwide, secured over $42.8 million in follow-on funding, and supported research that resulted in 13 peer-reviewed journal articles. Named a White House “Champion of Change” for Precision Medicine, EE has been featured in the New York Times, STAT, theSkimm,,,,, CBS’s The Doctors, Yahoo Health, and many other national and local media outlets for its disruptive approach to accelerating breakthroughs and Emily’s inspiring story.

While the urgency of the organization is inspired by Emily’s advanced-stage disease, the work of EE gives impetus to advances that can benefit not only people with CF, but also millions of people living with genetic diseases, as well as those combating antibiotic-resistant infections for whom there are no existing treatments. Recent research grant awards include:

The award of $220,000 to Advance the Development of Phage Therapies as a Means to Treat Multidrug-Resistant NTM Infections

The award of $220,000 to University of Iowa Laboratory to Advance Research Into Correcting Nonsense Mutation CFTR Function

The award of $220,000 to a Team Exploring Novel Gene Editing Technology

After twelve years of steady organic growth largely due to the dedication and generosity of the EE community and donors, leadership is eager to take its next steps into organizational maturation, to ensure a solid foundation for the pathway to finding lifesaving treatments for the 10%. Achieving this goal includes investing in a strong communications and marketing leader, who can carefully translate and communicate both powerful and personal stories, as well as complicated scientific research.

About the Position:

Reporting to the Co-Founder, Emily Kramer-Golinkoff, the Director of Marketing and Communications (DMC) will lead all brand marketing strategy and execution in support of the organization. This person will be responsible for developing strategy while managing, implementing, monitoring, and evaluating the marketing and communications initiatives for EE, including their digital and social media presence. The DMC will play a vital and impactful part in amplifying powerful stories and research while inspiring a variety of audiences to take action for the final 10%.

This position will require strong program management skills, exceptional writing ability, a keen eye for style and branding, and a passion for storytelling through digital platforms. The ideal candidate will have a high sense of urgency and operate in a proactive, results-oriented, and sensitive manner.

The DMC will join a core team of seven, comprised of two co-founders, a Chief Scientific Officer, Director of Operations, Director of Special Events and Fundraising, Development Assistant, Database Manager, and additional freelance support staff. EE is a remote organization, with co-founders based outside of Philadelphia. This is a fully remote position with periodic travel expectations yearly. This person must be a self-starter and motivated by the work and mission of EE.

Key Responsibilities

Strategy & Management:

In close collaboration with leadership, develop, execute, and maintain a cohesive and primarily digital marketing and communications strategy driving towards key organizational goals, inclusive of brand management, content creation, campaign management, and external relations.

Become a knowledgeable representative for EE with an understanding of the issues, research, and developments surrounding EE’s mission while keeping a finger on the pulse of the CF and rare diseases space.

Lead EE’s email marketing strategy and editorial calendar to drive traffic, engagement, leads, visibility, and support.

Direct press and media related activities of EE to raise the profile of the organization and its goals and initiatives, including both traditional and social media.

Develop and execute a cohesive social media strategy including building and managing EE communities on social media to support growth and engagement in pursuit of EE’s goals

Operate as chief project manager, holding self and others accountable to project plans, deliverables, deadlines, and outcomes.

Manage contractors and vendors determined necessary to support the strategy, potentially including for social media, web design, graphics, video production, print materials, and other freelance support.

Utilize analytics and reporting systems to test, evaluate, iterate, and grow the audience and refine marketing and communications strategy.

Ensure monitoring, learning, and reporting is accomplished by close tracking of metrics, milestones, and goals.

Provide support as needed to Emily in her role as lead spokesperson.

Marketing & Communications Execution:

Serve as the focal point for EE communications, developing stories and narratives from people with CF, families of people with CF, researchers, clinicians, thought leaders, and other audiences.

Oversee all digital marketing activities and online community engagement, inclusive of social media, SEO/SEM, guest blog posts, paid online ads, and website updates.

Build, manage, and maintain a detailed annual calendar for all marketing and communications activities.

Provide project management and marketing support for key fundraising and programmatic activities, including events, peer-to-peer fundraising, and research updates. This person will play a critical role in the organization’s annual signature event, an Evening with Emily’s Entourage gala.

Utilize email marketing and online analytic tools to maintain email distribution lists, send emails, and measure the effectiveness of digital activities.

Lead the production of multi-channel awareness campaigns, such as campaigns during Rare Disease Week and CF Awareness Month.

Seek out opportunities to engage with media, influencers, and thought leaders, pursue relevant sources and outlets to pitch and place stories.

Oversee and assist in the production of collateral inclusive of annual reports, press releases, donor appeals, simple graphics projects as well as other communications.

Key Qualifications and Who You Are:

You are inspired by the mission, vision, and values of EE. You share a commitment and sense of urgency to bring lifesaving treatments to the final 10% of individuals with CF. You thrive in a fast-paced and collegial environment that values relationships, collaboration, and a laser focus on mission. Knowledge and/or experience with medical research and advocacy is a plus.

You are a versatile and well-rounded communications professional. You bring at least 6 years of work experience in mission-driven digital marketing and / or communications, with demonstrated skill in brand management, content creation, digital media, advocacy, and community engagement.

You are a strategic thinker who can implement tactically. You are skillful at seeing the big picture and translating an organization’s vision, mission, and goals into communications strategy. You are analytical and bring a data-driven approach to planning, executing, and evaluating campaigns and activities.

You are an exceptional writer, storyteller, and communicator. You are skilled in developing compelling content that articulates an organization’s impact and inspires a range of audiences. You are able to package data and stories in a way that creates powerful written, visual, and spoken narratives across a variety of digital channels.

You are an excellent task and project manager, with a strong sense of follow-through. You succeed at managing multiple workstreams and motivating, coordinating, and directing others to stay on track. You possess strong attention to detail and capacity to balance competing priorities and deliver projects on time and within budget.

You bring a collaborative approach to working with individuals and teams. You bring positivity and a consultative approach to working with others, with the ability to understand and respond to internal and external stakeholders’ needs. You are open to input and feedback and play well with others.

You are tech-savvy and keep up with marketing tools and trends. You are proficient in working with commonly used marketing technology systems and tools, such as Google Drive, Google Analytics, WordPress, Bloomerang, Classy, Sprout Social, Canva and/or similar programs.

Proficiency in photoshop is highly desirable.

You are a creative and resourceful self-starter. You bring a “get it done” attitude and thrive in a highly entrepreneurial and fast-paced setting. You drive innovation, solve problems, and maintain a high degree of flexibility and creativity in a dynamic environment.

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.

Covid Vaccine Policy: Emily’s Entourage employees are required to be fully vaccinated to attend in-person work-related activities. Reasonable accommodations will be made for individuals with a sincerely held religious belief or disability who are not vaccinated.


The annual starting salary for this role is $100,000 and is commensurate with experience, competencies, and skillset.

To apply, please submit your cover letter and resume in confidence here.

For more information, please visit