Erin Stanford

We are SO very excited that you are supporting us for the 2023 Great Strides Walk! And even more excited that this year's walk will be held in person again! This year's walk will be in a new location!! We hope that you will join us in Durham, NC on Saturday May 20, 2022! This year's walk location will be in Brier Creek.

Team Kure for Kennedy was created shortly after we learned of Kennedy's diagnosis with Cystic Fibrosis at 3 weeks old. When we learned of Kenendy's CF diagnosis, I immediately reached out to the Cystic Fibrosis Foundation for help and support, and have been involved ever since. Over the last 8 years, with the love and support of our family and friends, Team Kure for Kennedy has raised over $192,000 for the CF Foundation and know that one day our efforts will be part of an ultimate cure!

The last year has been rough for Kennedy as we've started to see more symptoms of her CF rear their head. Doctors visits started to include the words "severe" and more medicines and therapies were added. Kennedy was event sent by ambulance to the ER on night when urgent care was unable to get her oxygen levels up to a stable level. Her overall lung function dropped to below 80%. However 2021 also brought some good news! A medication that had brought significant improvement to people with CF was finally approved for Kennedy. Within 5 months of starting Trikafta, Kennedy's lung function increased from 76% to 96%. A 20% increase is huge and wouldn't be possible without the help of the Cystic Fibrosis Foundation!

You may be asking yourself, what is Cystic Fibrosis? And it's a long, involved answer. CF isn't a simple disease, and there are so many parts of the body that if effects. But here are some important things to know about the disease:

* CF is a genetic disease where BOTH parents need to carry the CF gene in order to pass it along to their child. If both parents have the CF gene, there is a 25% change a child will have the disease (think back to high school biology!). Neither Darryl nor I knew that we carried the gene for CF. Also, there are thousands of different CF gene mutations out there! Kennedy happens to have one copy of the most common mutation, and one that is extremely rare- which will make it harder for her to qualify for many of the new medicines aimed at targeting the underlying cause of the disease.

* CF mainly affects a person's lungs. A defective gene in a person with CF causes fluids in their lungs to become thick and sticky which means more coughing, more wheezing, and chronic lung infections. In fact, many people with CF end up getting lung transplants later in life due to their lung function dropping to extremely low levels.

* CF does not just affect a person's lungs. It actually affects every organ in the body, except for the brain! Besides the lungs, the digestive system is the second mostly affected part of the body. Many people with CF cannot get all of the nutrients from their food and actually have to take medicine every time that they eat in order to be able to do so!

* CF is not contagious sort of. CF is not contagious to someone that doesn't have CF. However, people with CF cannot be around each other because they can pass dangerous bacteria to each other. In fact, only one person with CF is allowed to attend any CFF fundraiser that is indoors because of this. In addition, at outdoor events, people with CF must stay at least 5 feet away from each other! You will see Kennedy wearing a neon sticker for this reason- to alert others with CF not to come near her.

* CF is considered a life shortening disease. CF is a progressive disease, so as Kennedy gets older; it is likely that she will experience more and more issues, especially relating to her lungs. However, with the help of the CFF, there are so many amazing medications out there right now, and in the works, that will help prevent this from happening! And wow- are they making progress!! 50 years ago, the life expectancy of someone born with CF was only a few years old. Today, someone born with CF is expected to life until the age of 40.

* It is estimated that 1 in 23 people the CF gene, many of whom do not know it (Darryl and I didn't know we did!). Do to the high number of gene carriers, CF is considered the most common rare disease.

* People with CF lose more salt from their bodies when they sweat. Kennedy actually needs to eat more salt than the average person to compensate for this. Many people with CF are known to have salty skin- and it is rumored that in the middle ages, children with salty skin who passed away at young ages were considered hexed or cursed.

How does this affect Kennedy now?

Well, we do many preventative treatments. Kennedy does something called a "vest" for 40 minutes every day. She wakes up early (and not easily!) before school and does her vest for 20 minutes, and does her vest for 20 minutes before bedtime. We also do nebulizers for 15 minutes every evening. Kennedy also sees a specialist every 2-3 months at UNC where they monitor her lung function. She also gets monthly injections to help her lungs and takes several pills every day. 

Now that you know a little bit about Cystic Fibrosis, we hope that you'll consider making a tax-deductible donation to the Cystic Fibrosis Foundation and Team Kure for Kennedy. All of the donations truly go towards helping extend the life expectancy and qualify of people just like Kennedy!

Click "Join This Team" or "Donate to a Team Member" to help support us!