Every year we like to share with you the progress on research to cure Cystic Fibrosis and what this means for life with Jude—and to ask you for support. We write with continued great news. As we put in our note last year, In October of 2019, the FDA approved the drug that we and everybody with CF has dreamed about. The new drug combination treats the particular genetic defect that causes Jude’s CF. This is the news that we have been waiting for since Jude was born.
In early 2020 Jude began taking this new drug and the results have been everything that we hoped for. His lung function, which is the primary indicator we use to track his health, continues to improve. His lungs work above the level of a typical kid his age (14), a true miracle.
Jude is continuing to play his part in CF research to advance more breakthroughs. He has participated in probably half a dozen different clinical trials over the years. He recently wrapped up one that we are particularly excited about. In addition to the new drug treatment, Jude also does a number of other medicines each day, including 30 minutes with a vibrating vest and about 30 other minutes with a variety of inhaled medications. This new clinical trial tested whether it is possible to maintain high health with the new drug while eliminating one or more of the other treatments. Success. Jude is now phasing out the use of some of his historic inhaled drugs since the new pills he is taking (Trikafta) seem to be doing the job.
Since Jude was born and we found out that he had cystic fibrosis, our goal has been to do everything that we could to keep Jude’s lungs healthy until the medical community could develop a breakthrough drug that could help maintain his health throughout his life. Our dream has been that he could live a full, healthy life. Our hope has been that he could avoid the terrible fate that so many people with CF before him have had, which included chronic health problems, lung transplants, and a very early death.
Because of the Cystic Fibrosis Foundation, this is exactly what is happening. Because of their incredible work, Jude is healthy and (knock on wood) is on track for a pretty healthy life.
And he is making the most of it. He loves playing ultimate Frisbee. He is on the varsity team as a freshman at Garfield High School, and also plays on some rec teams. He enjoys watching sports on tv, especially football and basketball. He likes beating his old man and his brothers and friends in fantasy sports leagues. He still loves playing video games with his friends. He is living a happy and healthy life.
None of this would be possible without the Cystic Fibrosis Foundation. Quite simply, they have helped to save Jude’s life, and to improve the lives of tens of thousands of people with CF.
Jude’s life experience tells a lot of the story of how effective the work of the CF Foundation is. So does this chart below, which shows how rapidly the life expectancy of somebody with CF has increased in a relatively short period of time.
While we are of course thrilled with the progress that has made such a difference in Jude’s life, there are still many people with CF that have not benefitted from the breakthroughs that have helped Jude. There are a large number of defective genetic combinations that cause CF. While there has been incredible progress with the one that Jude has, others are still lacking breakthroughs. The CF Foundation has made a commitment to not stopping until everybody with Cystic Fibrosis is cured. And neither will we. We going to keep doing what I can to help their incredible work.
Please consider making a gift to support the Cystic Fibrosis Foundation here.
Thanks to all of you for everything that you have done over the years to support us with your incredibly generous checks to the CF Foundation and for your love and support.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To help minimize the risk of COVID-19, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.