Join our team Salty Superheros and help us get one step closer to a cure for cystic fibrosis – a rare, genetic, life-shortening disease!
Henry was diagnosed with CF by a positive newborn screening. We were home 6 days postpartum From delivery with what we thought was a perfectly healthy baby boy, when we received the news! Our Journey has been a long learning experience already the last two years! We are thankful Henry’s lungs have been thriving and he is showing us what Hero’s are made of!
Henry has struggled with Gastrointestinal disease and chronic constipation. Henry has had multiple hospitalizations, he suffers from weak immunity, and clear/cleanouts regularly. Due to Cystic Fibrosis it has put a toll on Henry’s development. He has been diagnosed with sensory processing disorders, autism spectrum disorder, and PTSD. While no two CF Stories are the same as this disease chooses how it affects you individually our hearts ache for other CF Families. Though we resign here locally in WV. Our CF Care Team is at Cincinnati Children’s Hospital. Henry was also diagnosed with Autism in March of 2024.
Denver is our littlest CF Super Hero! We got the diagnosis after receiving a normal newborn screen in 2022 this year 2024 of February at Cincinnati Children’s Hospital. Denver had two sweat test and a bigger genetic panel. Our hearts was crushed all over! Denver will have lots of up coming test this year and started medications. As well as several therapies! This is why we stride!!
Our Team is now Salty Superheroes, instead of Our Hero Henry! We have two tiny but mighty Super Heros now!
God has touched our boys by providing for them.
We want you to join our Team by donating any amount of money even if it's $5! Than help raise awareness by joining us on MAY 11th at 10 am at Capitol Steps! You may donate without participating in the walk, all proceeds go to helping CF stand for Cure Found! Every dollar helps add tomorrows to another warrior. As well as you can join us just to take steps to raise awareness!
With supporters, family, and friends 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!
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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.