Advocating for the Urgent Unmet Needs of the Final 10%

The radical treatment advances for 90% of the CF population have given rise to the misperception that “CF is done.” It is more urgent than ever that we combat this thinking and continue to advocate for the critical unmet needs of the final 10% of the CF community that does not yet benefit, including those with nonsense mutations of CF.

EE has emerged as a thought leader in the CF, rare disease, and patient-led research spaces, securing invitations to speak at prestigious conferences and coverage in major media outlets.

Through speaking engagements, press coverage, and social media, EE proves that patients, families, and communities have the power to put even rare mutations of rare diseases front and center. Our thought leadership has helped raise visibility, putting the urgent unmet treatment needs of the final 10% on the research radar and driving transformative advances in research and drug development. It also provides a roadmap for other rare disease organizations and demonstrates the value of patient-led research organizations to the broader biomedical community.

EE also continued to deepen its relationship with other major stakeholders in the CF and biomedical fields. In April 2020, Emily was selected as one of five participants in the inaugural cohort of Milken Institute’s FasterCures LeadersLink program. This program fosters the development of emerging leaders of nonprofit biomedical research organizations and allows them to make connections to catalyze future efforts.

EE in the News

Below are a few highlights of press coverage in 2020. For a comprehensive list of our media coverage, visit our pressroom.

WHYY: COVID-19 makes life more difficult for those with cystic fibrosis

The Philadelphia Citizen: Tips from a Life of Avoiding Infection

Nature: Bacteria-eating viruses could provide a route to stability in cystic fibrosis

Cystic Fibrosis News Today: Emily’s Entourage Awards $790K to Support Work on CF Therapeutics

The Economist: State of patient centricity 2020: Advancing from patient-first intentions to true co-creation

Additionally, we further cultivated a strong relationship with the Cystic Fibrosis Foundation, establishing a program whereby the CFF directs meritorious projects that fall below their funding line but align with EE’s mission to apply to EE for funding. EE is also an active member of the Cystic Fibrosis Engagement Network, a consortium of CF organizations advocating for policies that further patient access to approved CF therapies that includes Cystic Fibrosis Research Institute, Boomer Esiason Foundation, The Bonnell Foundation, Rock CF, and the Cystic Fibrosis Lifestyle Foundation.

The Boomer Esiason Foundation featured Emily in a podcast hosted by Jerry Cahill entitled, “Leaving No One Behind — Reaching the Remaining 10%,” spotlighting the unmet needs of those with nonsense mutations of CF.