I recently traveled to Lexington, Massachusetts, joining others from our community to celebrate the opening of the new Cystic Fibrosis Foundation Therapeutics research laboratory, dedicated to accelerating the discovery of new therapies to treat the underlying cause of CF. In this state-of-the-art facility, the talented CFFT Lab team is working with scientists around the world to explore exciting new technologies that could help put us on the path to a cure for all people with the disease.
I am always inspired by the brilliant and inquisitive researchers who are tackling the toughest challenges in CF and always moved by their personal commitment to our mission. What made my visit to the Lab especially inspiring was learning more about the questions our research team now has the chance to ask, including how to advance new treatments for people with the rarest CF mutations.
Many of these conversations would have been unimaginable just last year. I was struck by how far we have come since I first became involved with the Foundation more than 30 years ago, and I also reflected on our community's journey through a new lens.
When my son Will was diagnosed with CF at age 2, there were few treatments to manage the symptoms of the disease and the pieces of the genetic puzzle behind CF were barely visible. We were told Will could expect to live about 17 years. Like all families receiving this news, our world changed. I focused all of my strength and ability on helping Will stay healthy, thrive and surpass that expectation.
Will was a fighter and grew up to be a tenacious and versatile athlete and later developed a talent for the culinary arts. He shared this passion in a creative way with his friends and our large family. Will took on his disease with a gentle but determined sense of humor, particularly with his mom and his excellent CF care team, who became devoted friends and a firm part of his family.
After a series of hospitalizations, Will lost his battle against CF on May 16 this year. He was 34, and lived a courageous and interesting life. But it was a tough one, his last year especially so, and it was much too short. That is the reality of this disease.
I miss him every minute of every day, but my loss is not unique in the CF community. Many parents, siblings and friends have shared this loss before me, and their compassion and understanding have been a deep comfort -- along with Will's faithful friend, his dog Gatsby, who now lives with me.
The incredible commitment of so many families after their greatest loss is a powerful part of the CF community. Their remarkable strength and support have helped drive so many of our successes and inspired us to do everything we can to put an end to this disease.
Over the past few months, I have also been newly inspired by friends with CF and families across the country whose lives have been changed by the exciting scientific advances made possible by the CF Foundation and all of the amazing people who make up the CF team.
A friend in Colorado whose adult son has experienced transformative changes on Kalydeco made a point of telling me that she is going to stay in the fight. One young woman told me recently that, after being on Kalydeco, she's gained enough weight that her doctors say she may need to go on a diet, advice that she never imagined she'd get. And I know several people taking Orkambi who say that the opportunities that have now opened up for them have made them even more devoted to our mission.
In their different ways, each of these individuals has emphasized to me just how much they owe to the CF Foundation and to our entire community. They know that our job is not done and that there are many more people with CF who do not yet have a treatment. Even though they or their child or sibling now have a drug that treats their CF, what began as a personal commitment to our mission has been transformed into a commitment to everybody living with this disease. “We are not going away,” they tell me, and I know that, like me, they are here to stay.
That powerful sense of a shared journey is the fabric of our community. It is what has made us so unique and successful, and what unites us in the hardest of times for some and the most hopeful for others.
It is a long journey, and it will take our strong and enduring commitment to find the answers for every person with CF, especially those who have rare CF mutations, as my son did. Though Will won't be here to get the new treatments on the horizon, I will continue our journey to find a cure -- on Will's behalf and for all people with CF. I am proud to be part of such an amazing group, and I know together we will reach our goal.