Shining a Light on the CF Community

We are perpetually humbled by the superhuman strength, perseverance, and solidarity that the CF community demonstrates on a daily basis, and we feel deeply honored for the privilege of experiencing it firsthand. A major focus of 2020 was using Emily’s Entourage’s platform to shine a light on the CF community and share their stories in their own words, showing the world who we are working so hard to save and why.

In 2020, EE launched digital and social media campaigns to raise critical awareness for Rare Disease Week in February and CF Awareness Month in May that spotlighted CF community stories. For Rare Disease Week, EE launched a week-long digital and social campaign with the 2020 “No One Should Be Left Behind” video as the centerpiece, promoting the message that no mutation or disease should be too rare to matter.

As part of the Rare Disease Week campaign, we developed content and media partnerships to spread the word and raise awareness, including with CF Roundtable, which featured a guest blog post by Emily about being part of the final 10%.

Similarly, for CF Awareness Month in May, EE launched a month-long digital and social media campaign to raise awareness for CF, featuring personal stories of hope and resilience from the CF community. The campaign included guest blog posts from Jarrod Landau und Miriam Figueira, two individuals with CF, and Christie Salema, the parent of an individual with CF. The posts highlighted the difficulties of living with a rare disease, including struggles with the progressive nature of CF and concerns about receiving adequate care over the course of the pandemic.

That same month, EE released a new film that showed the parallels between COVID and CF as part of its virtual EENY: LIVE! event. The film featured a series of powerful testimonies from members of the CF community that built on the general public’s newfound understanding of and empathy for issues the CF community lives with every day, including germ concerns, isolation, physical distancing, and panic around breathlessness.

Finally, EE rounded out the year with “The Magic Line” year-end virtual campaign. The campaign featured a powerful video that juxtaposes the stories of two women with CF whose stories were the same — until they were not, when a new mutation-targeted therapy was approved in October 2019 for 90% of people with CF. One woman was part of the lucky 90% that qualified for the therapy, securing her a second lease on life, while the other fell in the unfortunate 10% that did not. The film explores how a fine, seemingly random line drawn between the 90% that qualified for the breakthrough therapy and the outlying 10% that did not had the power to dictate everything — hope and no hope, even life and death.

In addition, The Magic Line campaign featured four powerful video testimonials from CF community members, including two individuals currently benefiting from the new therapies — Maria Frey und Gunnar Esiason — and two who are part of the final 10% that are not eligible — Miguel Rodriguez und Shelby Luebbert.

In addition to showcasing compelling stories from the CF community, EE had long dreamt of launching a peer-to-peer outreach and fundraising initiative. In November 2020, EE was able to accomplish that goal, launching “The CureFinders Crew” (CF Crew), a peer-to-peer fundraising network designed for and by the CF community. Through the CF Crew, we equipped the CF community with the tools to leverage their own stories and harness their networks to raise critical funds and speed lifesaving research and drug development for the final 10%.

Co-chaired by Erin Shanahan, Miguel Rodriguez, and Loreto Dominguez, the inaugural CF Crew was a massive success. Ten families participated and collectively raised over $92,000 in just three months, proving the unstoppable force of deeply motivated families on a mission for their loved ones. We remain so deeply grateful to our CF Crew co-chairs, participants, and donors, and we look forward to expanding this program in the coming years.