We are so glad that you have joined Judah’s Lions! Judah was diagnosed with Cystic Fibrosis when he was about 6 weeks old. From that moment on, our worlds shifted upside down into a reality that we didn’t knew existed.
His first five years (related to CF) were filled with pills, medical appts, weight loss, an ng tube/Gtube, many hospitalizations, treatments, and just so much for him.
On his 5th birthday, he was in the hospital, and family surrounded him there for a party. Judah remembers this vividly. That had been his last hospital stay until last November of 2023.
Orkambi and Trikafta kept him healthy until the beginning of 2023, along with all of the other treatments and medications. Judah experienced some side effects with Trikafta, so we decided to pull him off of it. Weighing his physical health with other side effects is something I never considered when we started he or we would have to have choose in this journey with CF. Judah’s lung function declined from 110 to 96 when coming off Trikafta, which is typical, but then down to the 80s. With two admissions to the hospital, it hasn’t come back up, so we decided along with Judah to start a lower dose of Trikafta again.
It is incredible how quickly you can see and hear the difference with this medication. I could hear the mucous clearing. Judah said his nose felt clear. He said he could run as fast as the fastest kid again… I feel hopeful.
CF is not a beautiful disease. It’s painful inside for Judah. I think that’s all that’s mine to say.
This is what Judah says:
“It’s terrible and no one likes it. Treatments every day, a feeding, and you have to do everything every single night. It’s a lot of responsibility.”
CF definitely feels like a lot for Judah. He feels like it makes him who he is, but does dream of a cure for it..
Judah loves the CF walk and expresses every year the love he feels for people coming out to support him to walk to raise money and find 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, or just join our team to walk with us to support Judah on the day of the walk!
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.