Joe & Jenny's Page

Central Ohio CF Cycle for Life

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Raised: $430.00

Goal: $5,000.00

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  • Julia at Cincy Children's 2021
  • fightcf.cff.org/goto/riding4JB


2021 was an eye-opening experience for us. Julia went into the hospital for a somewhat routine CF lung "cleanout" of intense antibiotics thru a PICC line. After some setbacks she ended up in the ICU for severe low sodium levels. This was on top of the original issue of lower lung function. This was a very scary situation, and we are fortunate she did not have seizures or experience brain damage from this While we were inpatient, we learned that the CF Floor at Cincy Children's had seen a drop of 66% of CF inpatient stays the past 2 years. This is largely attributed to the CF Modulators medicines that your money has helped fund. That is incredible progress!

As we have mentioned in previous years, Julia is not eligible for the modulators due to her CF defect type. Approximately 93% of CF patients can take modulators and a large portion of those patients are doing exceptionally well. This reason is why inpatient stays are much lower. There are still issues for some who take the modulators. Some CF patients have CF liver disease that increases due to side effects and cannot take the full dose or any modulator meds. Imagine having a medicine available to help you fight this disease but because the CF has progressed to the liver or otherwise and cannot take it. Others taking the modulators have cognitive and behavioral issues as side effects impacting school, work, and personal life. So as great as the modulator meds are, there are still risks and concerns, let alone that Julia gets no benefit from them.

 Thanks for stopping by and reading our story. We appreciate the support of any kind to help us find a cure, financial, your volunteer time and spiritual support!

Team 4JB 

Joe, Jenny, James and Julia (+ Jet, our dog, & Jarvis our cat)



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