To Friends and Family-
Every year at this time 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.
This year, we are especially hopeful. Below is a note that I sent to many of you in December that summarizes why we have so much hope.
I have some great news about Jude that I want to share with all of you.
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 dream has been that he could avid 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.
Yesterday I took Jude to his quarterly CF visit at the incredible CF clinic at Seattle Children’s Hospital. It appears that dream could indeed become reality.
He had his best visit ever. His lung function was fantastic, better than a regular kid his age. He had his best weight gain ever. He did the exercise test, and he did amazing. Bottom-line, Jude’s current health is as good as we could have ever hoped for.
When we met with his doctor, he told me the great news about the progress that the CF Foundation and their partners in the drug industry are making. They are in the final stages of a clinical trial for a drug combination that is showing intense promise, a drug that could allow Jude to maintain his health for many years to come in combination with the current treatments of drugs, vibrating vest, and inhaled drugs that he already takes.
This drug combination is on track to gain FDA approval for children age 12 and older sometime in the spring or summer of 2019. Jude will turn 12 on May 2, 2019, and be eligible for this drug. This could be the miracle that we have been dreaming about since the day Jude was born.
I want to caution that it is possible that the drug won’t cross the finish line and be approved. It’s not done until it is done. But the hope at the CF clinic is incredibly high.
I hope that this news fills you with as much joy as it does me and my family.
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.
Yesterday was a very good day on this journey.
A good day on the journey indeed.
None of this progress would have been possible without the incredible work of the Cystic Fibrosis Foundation. I have been raising money for this amazing organization for more than a decade, and I am going to keep at it until we have a cure that works for all people with CF.
If you would like to make a gift, please do so here.
Gregg and Sarah