Going the Distance in Cystic Fibrosis

May 01, 2020

Going the Distance in Cystic Fibrosis

One of the reasons I joined Vertex back in 2007 was the fierce passion I felt from every employee to pursue science in the name of transforming lives and to do right by patients in the process. Fast-forward to today, and our commitment to patients has not only grown stronger, but it has also been the guiding light that has gotten us to where we are. As Vertex’s first Chief Patient Officer, it’s an ongoing commitment I take to heart.

In the U.S., May is CF Awareness Month — a special opportunity for us to celebrate and recognize the accomplishments, opportunities and medical advances within the CF community. This year will certainly look a little different as we face new challenges with the evolving COVID-19 pandemic. Our top priority is ensuring the health and safety of the patients we serve and our employees.

Despite these extraordinary circumstances, recognizing CF Awareness Month is extremely important to all of us at Vertex. Throughout our 20-year journey in CF, our connections to the CF community have been rewarding in so many ways. Additionally, they’ve proven invaluable to our understanding of the disease and our drive to keep pushing for scientific breakthroughs. We welcome people living with CF into our labs, meet their families and join them for fundraisers and walks across the country. If you looked inside our buildings, you’d see letters, photos and drawings lining the walls of our offices and lab benches as a key source of inspiration. It’s the reason we’ve been successful in discovering and developing our CF medicines. It’s also the reason we’re not stopping until we find a cure.

Cassalina Family

L-R: Reshma Kewalramani, Jeffrey Leiden and the Cassalina family (Margarete, Eric, Kourtney, Marc)

We’re committed to Going the Distance in CF. That means we won’t give up, no matter how tough things may become. We’ll continue searching for answers and relentlessly pursue research with the goal of discovering treatments for everyone living with this devastating disease. I’m confident this is a sentiment shared not only by every employee at Vertex, but also across the CF community by nurses, doctors, caregivers and people living with CF.

We are also conducting research to determine what treatments may be effective for people who are not eligible for one of our approved medicines. We are investing internally and with our external partners, CRISPR TherapeuticsArbor Biotechnologies and Moderna, Inc., to develop other potential approaches. Efforts to discover and develop therapies to potentially reach all people with CF through alternative investigational platforms, including messenger Ribonucleic Acid (mRNA) and gene editing, have been underway for years. 

Importantly, our commitment to the CF community goes beyond our research and medicines. As people with CF live longer, they face new challenges. We established programs that help people with CF live active lives, help CF families pursue higher education, and provide resources enabling nonprofit organizations to develop new programs for people with CF. We also have grant programs to support independent investigator-initiated research and the next generation of CF researchers.

Our Vertex Foundation Scholarship program is a perfect example. The $5,000 scholarships help people with CF and their immediate family members pursue two-year, four-year or graduate degrees. We plan to award more than 80 scholarships later this month — I’m really looking forward to celebrating (virtually) with the recipients and their families. Stay tuned for that announcement and to learn more about some of the talented students in this year’s program.

We’ll also be rolling out new resources for the CF community, like our partnership with CookTracks, a cooking podcast series co-hosted and produced by TV personality and cook, Rachael Ray and chef Andrew (Kappy) Kaplan. The series focuses on dishes created to meet the nutritional needs of a cystic fibrosis diet — and are recipes the whole family can enjoy. We’re all spending more time in our kitchens these days, so we hope you’ll listen and follow along. Stay tuned for more updates in early May!

This CF Awareness Month, we want the CF community to know: We won’t stop. We’ll keep Going the Distance until we have a cure. And, then we’ll keep going — we hope to apply our successes in CF to other disease areas and bring transformative medicines to others with life-threatening illnesses. 


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