Trey Johnson

Hey friends and family,

I hope you are doing well and enjoying getting back to a somewhat normal post pandemic life. The past two years impacted us all, whether negatively, positively, or both. Our family was no different. It allowed us time to reflect on our lives and our goals and gain an understanding of the “new normal” life we wanted to lead. One thing we noticed is the resolve in those around us, as well as in each other. I’m hopeful that we will continue to be able to see the good in all that is happening and hope that we all can continue to be safe and healthy.

I am writing you today because May was CF Awareness Month, and I want to share some exciting information about the progress that has been made towards helping those with cystic fibrosis live healthier, longer lives. I also want to share the personal impact of the CF Foundation. This November I will celebrate 12 years with the Cystic Fibrosis Foundation. I have seen so much during happen and am so proud to work for such an outstanding organization.

Cystic fibrosis is a genetic disorder that affects the lungs, pancreas, and other organs. It is progressive and can cause persistent lung infections and limit the ability to breathe over time. More than 30,000 children and adults in the United States have CF (70,000 worldwide) and CF affects people of every racial and ethnic group. During the 1950s, a child with CF rarely lived long enough to attend elementary school. Today, many people with CF achieving their dreams of attending college, pursuing careers, getting married, and having kids thanks to the work of the CF Foundation and community.

When I started in 2010 there were symptomatic medicines for cystic fibrosis, but there were no treatments to address the underlying cause of the disease, and less than half of those with CF were over the age of 18 due to a low median age of survival. Today we have four FDA approved CFTR modulators (therapies that target the underlying cause of CF). For the first time, average predicted survival of someone with CF born 2016-2020 has reached a new decade – 50!

My son Trey, at almost ten years old has grown up in the CF community. In fact, he was born just a four days after our 2012 Great Strides walk in Charlotte! In 2016 he and I went to the Chattanooga walk, and that is where he met King. King is also a ten year old boy – the only difference between the two besides their hair color is that King is a CF Fighter, he has cystic fibrosis. The two immediately because fast friends, and from that day Trey has wanted to raise money for him, to help find a cure for King. In fact, Trey has been worried about King over the past two years with the pandemic. It allowed him to get a small glimpse of what King and all CF fighters have to do to prevent infections, because what may be a cold to us could lead to much worse for someone with CF. Thankfully King and his family made it through and are continuing to find their new normal while also advocating and fighting for a cure.

I share this with you because I want you to see what I see – we can make a difference! We can help add tomorrows to the lives of those living with CF. As we continue to move past CF Awareness Month into the summer, please consider donating to Trey’s fundraising for Great Strides on behalf of King and all CF fighters. Our efforts have changed the face of this disease, and I believe that we have an opportunity to find a cure in our lifetime. I know Trey is counting on it for his buddy King.

You may donate online securely send a check (made out to the Cystic Fibrosis Foundation or CFF) to my office at 5401 Kingston Pike, Suite 230, Knoxville, TN 37919. Your donation is 100% tax-deductible and a receipt will be sent to you.

All support is welcome – thank you so much for helping us spread awareness about cystic fibrosis and bringing us closer to the day when CF stands for Cure Found!

Love, Jolly (and Trey, Brandon and Ellie!)