Team Jonah 2026

In our kitchen hangs a homemade poster that began with 365 paper tabs to mark each day of a yearlong IV treatment Jonah recently began.  Every morning, he pulls a tab off so that we can see the progress (and we have some fun surprises built in along the way!).  Last month he had a PICC line inserted, and three times a day he hooks up an antibiotic IV infusion, each one taking an hour to complete.  He is also taking multiple daily oral antibiotics, and soon to be added are an IV and nebulized phage therapy.  In the last couple of years Jonah’s lung function has declined significantly and his doctors are hoping to eliminate a bacteria in his lungs that may be causing the decline.  Having a PICC line, which causes many limitations to activities Jonah enjoys and presents a constant concern of infection, is challenging.  And on top of all the new treatments and medications, he still must complete his “normal” daily routine of two forty-minute breathing treatments and numerous medications.  Take a moment and imagine dealing with a PICC line in your arm, fitting in three hour-long IV infusions, two forty-minute breathing treatments, and managing dozens of pills…every single day.  It’s a lot for anyone, but especially for a 21-year-old guy who wishes he didn’t have to deal with any of it.  In addition to the day-to-day routine, Jonah handles constant phone calls from doctors, nurses, the pharmacy, and insurance, as well as fits in weekly appointments with a home health nurse, weekly blood draws, and monthly check-ups at the hospital.  We do our best to help and support him however we can, but he is largely responsible for managing it all.  He also works a full-time job as a CNC operator, juggles numerous side projects, and serves as a youth leader at church.  He exhibits maturity, character, and responsibility beyond his 21 years and we are so incredibly proud of him.
 

The harsh reality though, is that cystic fibrosis is a progressive disease with no cure, and the older Jonah gets, the more we see its negative effects on his body.  In this last year he has faced numerous health concerns, been hospitalized, and is now dealing with this very challenging yearlong treatment.  It is a lot to navigate physically, mentally, and emotionally and not a day goes by that we don’t wish Jonah could experience life without CF. 
 

Since its founding in 1955, the Cystic Fibrosis Foundation has been dedicated to researching lifesaving therapies and medications for CF with the ultimate goal of finding a cure for all people living with this devastating disease.  Thanks to the foundation’s tireless efforts, we now have drugs and therapies that improve treatments and daily life.  There are also some medications that help fight certain effects of CF and even correct the basic defect and dramatically improve the health of some types of CF gene mutations, although unfortunately not the type of mutations Jonah has.  We are incredibly thankful for the CF Foundation’s unshakable commitment to finding a cure for everyone with CF and we recognize the need for ongoing support to help achieve that dream. 
 

For 21 years, our family participated in Great Strides walks to raise money and awareness of cystic fibrosis and are so proud that Team Jonah has raised over $486,000 for the CF Foundation!  Due to rising event costs and an effort to focus as much money as possible on CF research, the foundation made the difficult decision to eliminate the Long Beach Great Strides Walk.  After so many years of participating in Great Strides, it feels bittersweet.  But we still remain dedicated to our commitment to raise money for a cure.  Our goal is to raise $15,000 this year, which will bring our total to over half a million dollars raised for the CF Foundation!  We hope you will help us reach this milestone goal!  Would you consider donating $21 in honor of the 21 years Jonah has fought CF?  Just click Donate to make a secure online donation.  Or you can write a check payable to “Cystic Fibrosis Foundation” and contact us for details on where to send it.  Donations are tax deductible and will be used to continue the CF Foundation’s care programs and vital research.

We greatly appreciate your continued help and support. Thank you for helping us change the meaning of the letters CF to Cure Found!
 

Sincerely,

Rob, Marikka, Jonah, Javan, and Ansley Ostermann