Gregg Small

To Friends and Family,

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.

Gregg and Sarah