Galvanizing a Movement for the Final 10%

The past ten years have led to this unique moment of insight for Emily’s Entourage. There’s a new vantage point, a new realization of the organization’s capabilities and power, and new opportunities to leverage for bigger, faster impact in speeding breakthroughs and a cure for all those with CF. EE has never shied away from the big stage, and now it’s pairing outsized impact with an expanded platform to drive awareness and galvanize a movement for the final 10%. EE’s voice — and responsibility — has never been greater. In turn, EE has stepped up its efforts to inform and inspire in diverse, innovative ways.

Awareness Campaigns
To mark Rare Disease Week in February 2021, EE created a powerful, week-long digital campaign themed “Rare is Everywhere” to celebrate and demystify what it means to live with a rare disease like CF. EE shared facts, insights, and stories on social media about rare disease and CF, with a focus on rare mutations of CF, including nonsense mutations, and provided thought leadership for efforts like Fingerpaint’s Rare Disease Panel. The campaign drew upon familiar uses of the word “rare” — like rare strength, rare vision, and rare opportunity — to celebrate the beauty and power of “rare.” A highlight included a tribute from Emily’s fellow Lower Merion High School (PA) alum and late NBA star Kobe Bryant, who recorded a message before his passing celebrating EE’s “rare mentality.”

Drawing on the concept of “lines” from EE’s “The Magic Line” year-end campaign, EE’s theme for CF Awareness Month in May was “Cross Out CF.” Throughout the month, EE celebrated the “lifelines” that connect and strengthen us — especially in life with CF. Personal reflections from the CF community, CF facts-of-the-day, EE throwback memories, and introductions to CF scientists and Entourage members were shared via EE’s social media and website.

The campaign included guest blog posts from Katie Fielding, a teacher, CF community leader, and adult with CF; and Steve Bell, a healthcare brand strategist, husband, father, and adult with CF. Katie shared some of the personal life lines she leans on for support and connection in her life with CF. Steve shared insights about the perspectives he has gained living with CF and what he wants those without CF to know about life with a chronic disease.

CF Stories
EE published 13 blog posts in 2021 highlighting the CF community, EE-funded research projects, and life with CF. Throughout the year, EE continued to create and release videos to help elevate EE’s message in virtual forums, which were especially important when people couldn’t be together in-person due to COVID-19 and given the additional infection control guidelines for people with CF. These videos included:

Arek Puzia’s CF story as parent of a child with CF

John Engelhardt, PhD, University of Iowa, discussing his groundbreaking work

Miriam Frankenthal Figueira, PhD, a postdoctoral fellow and an adult with rare CF mutations sharing her personal CF story

Video: “My Dearest Emily Kate: A Letter to Emily on her 36th Birthday”

Thought Leadership
EE amplified its voice and impact as a pioneering change-maker in the field through participation in major events and as a thought leader and resource for the industry. Speaking engagements in 2021 included presentations at Vertex Pharmaceuticals, Calithera Biosciences, Felix Biotechnology, Spirovant, and EE’s FDA listening session. EE participated in a CARB-x strategic review panel to help direct efforts in the CF antimicrobial space and determine how to guide their portfolio projects to address unmet needs in the population. On behalf of EE, EE co-founder Emily Kramer-Golinkoff also was a part of the inaugural group of FasterCures LeadersLink participants, part of The Milken Institute.

Social Media
EE’s social media impact continued to grow in 2021. EE’s online reach includes more than 16,400 followers between Facebook, Instagram, Twitter, and LinkedIn; 103,900+ annual video views; and 213,000+ annual web page views. EE also regularly communicates news and updates to its 7,500+ opted-in email recipients via a newsletter, EE Insider (sent three times per year).