A few weeks after Virginia was born, we got a call from her pediatrician letting us know that her newborn screening results pointed towards Cystic Fibrosis. We were absolutely crushed, confused, and praying that we'd learn otherwise. The following day Virginia was officially diagnosed with CF at Duke Children's Hospital. The team at Duke assured us that the diagnosis was not as grim as we initially thought due to the incredible advancements of medicines and treatments that have been funded largely by the CF Foundation. Not many families get the same type of news when their child is diagnosed with a rare genetic disease. Not as many families are able to have immense HOPE with respect to a disease and the lifelong impact it may have on their child. We do, we trust the power of medicine and we trust the CF Foundation that’ s driving this research, and most importantly we trust God with the life of our sweet little girl and that he can use her diagnosis for purposes beyond our understanding.
It's our goal and mission to raise money to support continued research for Virginia and the 30,000+ other American children, mothers, fathers, grandparents, etc. living with Cystic Fibrosis. We are hopeful there will be a day soon where this diagnosis comes with an immediate cure.
Please join our team and help us get one step closer to a cure for CF. Thank you in advance for your love, support, prayers, and donations. We are so grateful!
If you would like to walk with Virginia's Pack for the 2022 Great Strides event, we'd love that! The event will be held on 5/14 at 79 TW Alexander Dr. @ 10A. Please reach out to Katie if you want to join our team.
More on CF and the CF Foundation below:
Cystic Fibrosis a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. It can impact the lungs, pancreas, and other vital organs. For more information on CF, visit: https://www.cff.org/intro-cf/about-cystic-fibrosis
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.