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A Glimpse Inside Our World: Striking Parallels between Life with CF and COVID-19

By: Emily Kramer-Golinkoff


In March, as COVID-19 was ravaging our world, I could not help but be struck by some of the parallels between CF and COVID—both the experience people were having with COVID as well as efforts to avoid contracting it. It was like the world was suddenly talking in our terms—lungs, breath, germs, physical distancing, vaccine development. There was heightened awareness and anxiety about health, and a sobering recognition that life was on hold as an insidious illness wreaked havoc on the world until a life-saving therapeutic—in this case, most likely a vaccine—could be developed.

It felt like the intensely intimate experience of having CF—the fear and anxiety about health and about breath, and the panicked feeling that the world outside is dangerous—was externalized and shared by the general public. It felt weirdly familiar.

At the same time, at Emily’s Entourage (EE), like many nonprofit organizations, we were faced with a need to convert our annual NYC gala to our first ever virtual benefit, EENY: LIVE!, a virtual event reimagined for a global Entourage, in light of COVID. It was a daunting proposition. We rely on these galas to raise critical funds to advance our mission. We had never hosted a virtual benefit before. Things were changing with COVID so quickly, it felt nearly impossible to predict what the world might be like in just a few months. We knew we wanted to offer something unique, refreshing, and energizing, but we had no idea where to start!

As we were developing the program, one thing became very clear. We had before us a unique opportunity to draw on the COVID climate and connect the general public to our CF experience and EE’s mission in new ways.

Our goals were twofold. First, we sought to build a deeper understanding of and appreciation for the urgency of breakthroughs for the final 10% without CFTR modulators for whom the realities of intractable lung infections, difficulty breathing, loneliness, and paralyzing fear about germs were not a 3-, 6- or even 12-month pandemic. It is until there is a breakthrough that releases us from this lifetime of crisis, a crisis that becomes more urgent with every passing day.

And second, as the world rushed to respond to COVID, we witnessed a new level of collaboration, focus, and urgency. We wanted to show what was possible when everyone—scientists, regulators, biopharmaceutical companies, clinicians, philanthropists, the general public—rowed in the same direction towards a shared goal. Think vaccines in 9-18 months! Massive repurposing and testing of approved therapies! Sharing of data between institutions! An influx of new clinical trials! Hundreds of new vaccine candidates! Infusions of BILLIONS into the effort! We could not help but imagine what would happen and what we could accomplish if we applied that same “all hands on deck” model to diseases like CF.

As a firm believer in the power of storytelling, it immediately became clear that there was no more compelling way to present this story than to hear from the CF community itself.

With that, it is my supreme honor to present Unmasked: Cystic Fibrosis in the Times of COVID-19:



Our previous galas have always been in person events, which meant that other people with CF could not attend due to the potential for cross infection. This awful reality of CF never ceases to shatter our hearts. We take measures to address this with the live-streaming of events and more, but we realize that nothing replaces in person attendance. The fact that the virtual format of this event allowed people from around the world, including most importantly other people with CF, to attend an EE event for the first time ever was undoubtedly the greatest silver lining of our pivot to virtual. And so, we decided to lean in...

To kick off the event with Unmasked: Cystic Fibrosis in the Times of COVID-19, featuring voices from the CF community on center stage, was deeply meaningful to all of us at EE and especially to me on an incredibly personal level. It was, by far, my favorite part of the entire EENY: LIVE! program because it featured such brave, honest and real accounts of our disease, and brought it to life for people in a way that was both piercing and yet hopeful at the same time. Being able to strike that most perfect balance was a testament to the spirit, resilience and candor of the nine people featured in the film, and also to the larger CF community.

You are the reason we do what we do, day in and day out, with every breath we take. To feature your voices front and center was the greatest honor for all of us at EE and most especially for me. I detest the disease that binds us, but I feel outrageously lucky, humbled, and proud to belong to this most mighty community with all of you.

With that in mind, I encourage you to consider sharing this video with your friends, family, and social networks—in honor of our most amazing community and in support of our urgent quest to leverage everything we learned from COVID to speed breakthroughs for the final 10%.

To view the full EENY: LIVE! Program, www.emilysentourage.org/eeny-live-event

***

If you are interested in learning more about Emily’s Entourage or want to get involved, please connect with us on social media (Facebook, Instagram, Twitter, LinkedIn, Blog) or reach out via email at admin@emilysentourage.org! Also, if you or your loved one has one or two copies of a nonsense mutation, we ask you to consider joining our CF nonsense mutation patient registry.

To learn more about Emily’s Entourage, please visit www.emilysentourage.org.

About the Author: Emily is co-founder of Emily's Entourage, a 501(c)3 foundation that accelerates research and drug development for nonsense mutations of cystic fibrosis (CF), and an internationally recognized patient advocate and speaker who has advanced-stage CF.

Emily has a master’s degree in bioethics and certification in clinical ethics mediation from the University of Pennsylvania, where she also completed her undergraduate degree. She has given talks at The White House, TEDx, University of Pennsylvania's Annenberg School for Communication and Masters of Bioethics Commencement, American Thoracic Society, Stanford University's Medicine X Conference, and more. She was named a White House “Champion of Change” for Precision Medicine and was the recipient of the Global Genes Rare Champion of Hope for Advocacy Award and Philadelphia Magazine Luminary Award.

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*The CF Roundtable does not give medical advice. Any medical opinions represented in these articles are those of the writer and do not represent the views of USACFA, any of our community partners, or any other group or individual. We strongly suggest you consult your doctors regarding any medical references and before altering your medical regimen in any way. USACFA does not endorse any products or procedures. 

Registered Charity Number : EIN # 93-1036770

© United States Adult Cystic Fibrosis Association 2019

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