Welcome (back) to Cori's Sunshine Superheroes! This is our 6th year participating in the Cystic Fibrosis Great Strides walk and we are super excited to gear up for another great event. Last year we surpassed the $10,000 mark in terms of fundraising from the past 5 years - WOW! We cannot say 'thank you' enough to all those that have supported, and continue to support Cori and her team!
Cori is still an atypical case – she does her twice daily vest, takes her Kalydeco two times a day, and has the occasional antibiotic when she’s sick. She’s pretty healthy and we are BEYOND grateful for that. This last year she had her first lung CT scan (everything looked perfect), she began PFT's, and we completed our first of many 504 plans for school! Cori started kindergarten in the fall and it’s crazy to think that back in the 1950s, a child with CF rarely lived long enough to attend elementary school. It’s amazing to think about how far Cystic Fibrosis treatments have come in those 60+ years…and so much of that is a result of the work that the CF Foundation does. Just in the last year, they’ve achieved:
Positive results from a triple-drug combination - this combination could potentially help treat the underlying cause of CF in a significant group of the CF population - bringing the total of CF patients receiving CF Modulator medications (like Cori) to approximately 90%!!!
Approval of Kalydeco for children between 1-2 years old (this is Cori's medication)
Approval of Orkambi for children between 2-5 years old
Awarding of $11 million to Icagen for nonsense mutation research (one of Cori’s mutations is a nonsense mutation)
Increased work and awareness for gene therapy
All of these things are helping to extend the tomorrows for CF patients. However, because there is SO much uncertainty right now with healthcare in the United States, it is more important than ever that we continue to support the CF Foundation and all that they do. The Foundation is a big voice for CF patients when it comes to things like pre-existing conditions, life-time maximums, drug access, and more.
My intent with this team is to help raise awareness and funds to find a cure for Cystic Fibrosis - for EVERY child and person with the disease, not just Cori. We always have a fantastic time participating in the Great Strides Walk - won’t you join us? Whether you make a financial donation, participate in the Great Strides walk for Cori’s Sunshine Superheroes, or just support us with your encouragement...THANK YOU! -Julie
What is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
clogs the lungs and leads to life-threatening lung infections; and
obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
The Cystic Fibrosis Foundation
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters — patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.