Harper Rayne is her name. She is 4 years, full of spunk and sass! Harper was tested at 2 weeks old for Cystic Fibrosis and diagnosed at 5 weeks old through lab work and a sweat test. It was also confirmed that Harper had Pancreatic Insufficiency (PI). PI is very common in CF. It means that Harper’s pancreas does not function well enough on its own to allow her to absorb the nutrients she needs with out pancreatic enzymes. So because of this she has been taking medication since 5 weeks old. Throughout our journey we have been very lucky when it comes to Harper’s health, with very few setbacks.
Recently a huge breakthrough was made in the CF community. The FDA approved Trikafta, known as “The miracle drug” and it is drastically changing the day to day life for a person living with Cystic Fibrosis. Harper will be starting this medication end of June mid July and we can not wait! While being life changing/saving it is still not a cure and only specific mutations are eligible for this medication. Generous donations to the Cystic Fibrosis Foundation are what helped this historical day happen. If you’d like to join our fight in finding a cure, please consider donating, sharing or signing up to walk with us at the Great Strides walk!
THANK YOU SO MUCH!
UNTIL IT’S DONE!
With the money that is raised by such events as this, it helps further research and allows families affected by this disease to have continued access to treatments, medications and medical professionals. We are encouraged by all of the progress and advances in research for Cystic Fibrosis and hope that a cure can be found.
Join our team and help us get one step into finding a cure.With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF, fueling extraordinary medical and scientific progress. The life expectancy of someone born with CF has doubled in the last 30 years. Despite this progress, many people with CF do not benefit from existing therapies either because their disease is too advanced or because their specific genetic mutations will not respond. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease.
We walk in Great Strides for them.
Will you join us?
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let’s make CF stand for Cure Found!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.