Cheriz: My Life with Cystic Fibrosis

06/21/2026

So thankful the Cystic Fibrosis Foundation shared about Jen. They did a wonderful job showing her passion for CF advocacy, people, and life. She was a phenomenal role model and friend. 💜 🫁 🕊️

It is with heavy hearts that we share the passing of our dear friend, advocate, and CF Fighter, Jen Weber.

Born in 1973 and diagnosed with cystic fibrosis at just 2½ years old, Jen dedicated her life to making a difference. She began volunteering with the Cystic Fibrosis Foundation at age 10 as an "Ambassador of Courage", and over the next four decades became one of the most influential voices in Indiana's CF community and beyond.

Jen served on the Indiana Chapter Board for many years, co-chaired numerous virtual CFF conferences, participated in national working groups focused on improving CF care, and tirelessly advocated for people living with cystic fibrosis. Her impact on our community is immeasurable.

Beyond her CF advocacy, Jen was an accomplished attorney who served the Indiana Supreme Court and used her talents to improve the lives of others. She founded Comfort Finders, a nonprofit that supports adults with CF and other chronic illnesses during hospital stays, and was deeply involved with the Indiana Donor Network, the World Transplant Games, and the Transplant Games of America.

Throughout her life, Jen faced challenges most people could never imagine, including three double-lung transplants. Yet she never stopped fighting—not just for herself, but for every person living with CF, every transplant recipient, and every family navigating difficult circumstances.

Jen embraced life with her trademark motto, "YOLO" — You Only Live Once — and encouraged others to do the same. She also ended nearly every message with a word that perfectly captured who she was: "Onward."

To Jen, onward meant moving forward with courage, purpose, and hope, regardless of the obstacles ahead.

While we did not achieve a cure during Jen's lifetime, we honor her legacy by continuing the work she cared so deeply about. The CF community is stronger because of Jen Weber, and her influence will continue to be felt through the countless lives she touched.

Thank you, Jen, for your leadership, your friendship, your advocacy, and your unwavering spirit.

Onward. 💜

05/10/2026

💐 Today is Mother’s Day, and it would of been Laura’s 46th birthday. Its weird to think she never saw me as a mom. Laura was one of my best friends (but she also had )

Due to cross infection, our friendship existed in phone calls, letters, cards, shouting down hallways in the hospital, and zoom hangouts. But it was a fierce friendship. We fought life together. She cheered me on as I started the Princeton Great Strides walk in June of 2014 all while we watched her battle for her life. Her lung function kept dropping (18%) and she was denied twice for lungs. We basically were waiting and praying for a miracle. But a few months later, Laura passed at age 33 in 2014, I was 29 years old. Today she would have turned 46 years old.

I share this because she was one the BIGGEST advocates for the Cystic Fibrosis Foundation and great strides walks. So I share this as a reminder that the fight for a to CF isn’t over. We still need help to fundraise and research for a cure.

I fight even harder for my future now that I’m a mama, and especially since I’m a mama to a kiddo with different needs. 🫁💪 Laura would be so proud to see me as a Mom & would still be the CFF’s biggest cheerleader! 📣

05/02/2026

Oh my goodness! They are adding Fatheads this year at the Peoria walk. Who think we need a fathead of Andrew’s face or mine on the walk route?!?!

If you think so, help us crush our first fundraising goal of $1,000. Link to donate: https://www.facebook.com/donate/902340876092345/?fundraiser_source=external_url

05/01/2026

☺️I am so blown away by my local community and the high school that my kiddo will attend in the future! IVC High School raised over $38,000 for the Cystic Fibrosis Foundation! I absolutely love speaking and attending this awesome event. 🙌 From the hilarious costumes, to Chuck a Duck competition, and this year they had 18 staff get pies 🥧 in the face! Plus, witnessing the lunch auction teams bid for the lunch of their choice!!! Way to go Grey Ghosts 👻 ! 👏 👏 Shout-out to my husband and his employer for sponsoring & delivering the Hy-Vee lunch!

04/11/2026

My birthday was Monday. 41 years. I am thankful and lucky. I celebrate every birthday to the fullest, because I never want to take my life for granted. My birthday is mostly a positive day filled with love, family, and celebration. But, a couple moments always pop up that remind me of my “survivors guilt.” And I don’t push it aside, I want to remember my friends and take that moment to see how fortunate I am. For example: One of my childhood CF best friend’s Mom (a friend that passed when we were ten years old) told me Happy Birthday on social media. I felt so happy to hear from her, but it also made me pause. I couldn’t help but think how she feels seeing me turn 41 and knowing her daughter didn’t get to (I burst into tears for moment, remembering my friend, but I also smiled for how fortunate I was to have her as my friend). And another friend, Laura (My teen/adult “bestie” with CF) passed in 2014. Not a birthday goes by I don’t think of her! Her birthday would have been today. She would have been 45 years old. So while I love my birthday and don’t let the sadness take it over. I think it’s important to take a moment to reflect, feel, and be thankful. I’m SO thankful for 41 amazing years.

03/29/2026

Hundreds of advocates from the cystic fibrosis community are in Washington, D.C. today to ask their members of Congress to take steps to lower health care costs for the CF community. Your voice can help amplify our impact!

Urge your members of Congress to support the HELP Copays Act to ensure people with cystic fibrosis can access affordable, high-quality care and treatments, and oppose proposals that expand high-deductible health plans paired with Health Savings Accounts which undermine affordable access to care.

Raise your voice and act now: https://on.cff.org/March-on-the-Hill-2026