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 June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.