To our CF supporters
Have you ever needed to get to a particular destination but didn’t know how to get there? The first thing you do is to pull out a map (or more recently, your GPS) and find there is more than one way to get there! Now there are decisions to make, do you want to get there quickly? Do you want to pay tolls? Or do you want a scenic route?
The Cystic Fibrosis Foundation has a similar dilemma. Their vision of the road to end cystic fibrosis isn't a straight path either. It is an evolving map with many paths and unique challenges. The underlying cause of CF that each individual has determines what path or direction researchers begin. The Foundation's Path to a Cure center around three core strategies to address the underlying cause of CF: repairing broken CFTR protein, restoring CFTR protein when none exists, and fixing or replacing the underlying genetic mutation to address the root cause of CF. Each approach requires a different set of scientific tools and knowledge, leading the Foundation to bring together researchers and industry leaders from a range of disciplines to advance multiple areas of research in parallel, driving progress toward our goal (final destination) to make CF STAND FOR CURE FOUND.
It is hard to believe that Kayla is 17 years old. Being a Junior in high school she is at a point where she needs to decide what path to take in life. Kayla has so many interests it is hard to narrow it down to one thing. She has been playing soccer for many years. Then when the high school team needed a goalie, she added field hockey to her schedule. And just last week, she told me she was going to lacrosse practice. When I asked which sport she was going to play, she answered “both”. Her love of books has her reading novels of required reading that she reads for leisure. She is beginning to think about what college she wants to go to, what course of study does she want to pursue, and does she want to wear a blue dress or the green one to prom? Okay, so some questions are a little easier than other ones but they are decisions needing to be made. What road will her journey take?
When I look back over the past years, I am reminded of how much you had to do with Kayla’s progress. After all, your past donations have made great strides in her treatments. She is currently taking Trikafta and that is huge! She no longer has nasal polyps and her general health is better. And good news, the average life expectancy is now 50 years old! So much better than the 30 years when she was first diagnosed but still not good enough. Trikafta is great but it isn’t her cure. There are still other paths to explore. I figured if she was brave enough to take these steps to have a full and wonderful life, then we are in it with her! So………another letter from us hoping that you, too, want to continue your support of her journey.
For the first time in two years, the Cystic Fibrosis Great Strides Walk will be in-person! The three Great Strides Walks this year are Pittsburgh, Erie, and Morgantown. Pittsburgh’s walk will be held on Saturday, May 14, 2022 at Point State Park. However, there will also be a virtual aspect.
For 16 years Kayla’s Crew has been a part of this event. Each year there have been more strides taken and each year new and better achievement have been made. Our family hopes to be a part of the next successful milestone.
I know you can’t suggest directions or maps for Kayla’s ride but you can help keep her on the road. With your donation you can fuel her journey and make it progress along quickly.
As always, we appreciate you support and love. Working
together we will reach our destination - CURE FOUND.
Sue, David, Kayla, Ty, Jamie, Bob, Jennifer, Sean,
Jordyn, Alaina, Declan, and Jason