As CEO of Vertex since 2012, I’ve had the privilege of building personal connections with many different people in the cystic fibrosis (CF) community – from people living with CF to their families and caregivers. Through these interactions, I’ve learned that each family has a unique story story to tell, not only of how CF impacts their lives, but also of their hopes and dreams for the future.
Take Lee Bombardier and her daughter Lauren Bombardier Weeks.
Lauren was diagnosed with CF at age three. But it wasn’t until she was 16 that the reality, and horror, of the disease hit her. One night, Lauren awoke coughing up blood, prompting her mom to rush her to the hospital. While there, Lee was told that Lauren had to change rooms in case she needed to be resuscitated.
Lauren looked at her mother and asked: “Am I going to die?”
A nurse herself, Lee had seen a lot of people die. But it was an entirely new – and terrifying – experience to hear those words from her own daughter.
I’ve heard Lauren and Lee tell this story many times now and, as a father myself, it’s painful to hear every time. But stories like these are essential for me, and for all of us, to understand as a reminder of how we need to keep searching for better ways to treat this terrible, life-shortening disease.
Beginning today, you can meet Lee, Lauren and other members of the CF community through a video series Vertex created to raise awareness of the impact CF has on people’s lives and to highlight the hope medical innovation is bringing to the community.
We want people to hear these stories because they describe better than any scientific data or clinical report the devastating burden CF has on people’s lives, the enormous impact that the scientific community is having on this disease, and the need for more treatment options. Hearing from these families also motivates us all to keep working to reach our ultimate goal, which is to develop effective treatments for everyone with CF and to continue to work our hardest to get patients access to these treatments across the world.
I am constantly amazed by the courage and the determination that people with CF and their loved ones have to live fully in the face of the uncertainty this disease can bring. I encourage you to visit the site we’ve created to help tell these compelling stories to hear from people like Lauren, who recently celebrated her first wedding anniversary. In her own words:
“I feel really lucky to be alive during this time. Now there’s just a lot more hope.”
Learn more about the Vertex CF Patient Video project here https://nyti.ms/2OfcvKy