2025: Hello, Friends and Family!

Happy 19th Anniversary to our GREAT STRIDES team, ROSE’S BUNCH! In 19 years, we have COME SO FAR!

What a milestone - Rose is now 18 and an adult! A milestone we weren’t sure she’d meet. When she was diagnosed with CF at just 12-hours-old and rushed to the NICU in Chicago, we were terrified and heartbroken for her future. We didn’t know how long or what quality of life she’d have.The outlook was bleak: the median life expectancy for a CFer was only 37-years-old and many people in their teens and 20s were very sick and awaiting lung transplants. Many didn’t even make it that long. As a young mother of just 37 myself, I wasn’t nearly done living yet; I couldn’t imagine my sweet baby girl having only that amount of life to live, IF she was lucky.

But, thanks to the extremely dedicated and progressive Cystic Fibrosis Foundation (CFF), created in 1955 by a small group of parents whose children didn’t even live to see kindergarten (life expectancy at the time), tremendous strides were being made in the research and development of new drugs and therapies to help CFers live longer and healthier lives. This was especially true after the CF gene was discovered in 1989 by CFF scientists, when hope and determination went into overdrive with the establishment of GREAT STRIDES, CFF’s largest fundraising event.  

GREAT STRIDES is dedicated to attacking CF from every angle: supporting new drug development, improving quality of life, and—ultimately—finding a CURE for this horrible and eventually suffocating disease.

When Rose was just a few days old, my dad, John Engel, learned of GREAT STRIDES and so, he immediately set to work forming a team to walk in her honor. My sister Karen came up with the clever name “Rose’s Bunch” and, while my dad sadly died a year later, his legacy has lived on. Karen and I took up the baton and for 18 years straight have tirelessly fundraised and walked in hopes of giving Rose and other CFers a better future. And, our efforts have paid off! Trikafta, the breakthrough drug that has changed the lives of so many, was approved in 2020. Since then: 

• Patients have seen their lung function increase from only 30-50% lung capacity to 70-90%! 
• The number of lung transplants have decreased by 87%!!! 
• More female CFers are able to get pregnant! 
• The percentage of children and adults needing IV antibiotics was cut by more than half!

As for Rose, my dad would be so happy to see that in her lifetime so far she has gone from:

• Having a life expectancy of 37 years to one of 61, extended by 24 years!!
• Being tube-fed every night (and all the complications that went with that) from ages of 1 ½ to 13

• Needing 2-4x/day 30-minute respiratory therapy sessions depending on her health to just 1x/day,

• Having 5 lengthy hospitalizations and 2 surgeries in the first 6 years of her life, to ZERO

• Needing over a dozen medications down to just 6.
• A closetful of medical equipment/supplies to just her percussion vest, air compressor, mask,

GREAT STRIDES has made all this possible! 

It is in gratitude for how far we’ve come and even more so for those less fortunate that we continue to walk. Because we still don’t have a cure and, unfortunately, not all CFers are able to benefit from new treatments like Rose has, due to their genetics and having various rarer CF mutations. There are still young children fighting to breathe and survive into adulthood. There are still patients waiting for double-lung transplants.There are still patients dying far too young. It is for them that we are determined to continue raising awareness for this “orphan disease” (one that affects less than 200,000 people in the USA and similar incidence elsewhere in the world and thus struggles to get funding because the limited drug sales would not recoup the cost of developing them; this makes the progress that CFF has made all the more remarkable)! And, considering the amazing strides that have already been made by the CFF, I am confident that one day “CF” WILL stand for “CURE FOUND”!!

We are so thankful that Rose was able to start taking Trikafta young before her health started to decline, and we are hoping she can maintain her 100% lung function longer and not have to face what older patients have. She is also still just loving her new life, free of the g-tube she endured her entire childhood, a freedom I doubt she will ever tire of. And now with therapy just once a day, life is even better! She is so very grateful every day for the strides that have been made. Her dreams are truly being realized and her future shines brighter BECAUSE OF YOU! Thank you so much for your continued support!