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, CNN.com, Time.com, People.com, AOL.com, 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.