Emily Stone

A message from the Michaels family:

It’s been over two decades, since Tess was diagnosed with cystic fibrosis at 14 months old. Over the years, we have shared many ups and downs, but because of CF research and your support of our fundraising efforts, Tess continues to do very well due to the drug, Trikafta, that she started taking four years ago.

Tess has been thriving and in December took a new job as a public health educator.  This is a great fit for her since she’s been educating others and sharing her CF story for her whole life! She loves reading, traveling, going to the gym, and is becoming a good cook.  We are thrilled that she’s living a “normal” life of a 23-year-old, which didn’t seem possible a few years ago. However, she still endures twice daily nebulizer treatments and an airway clearance vest, but she navigates this like a champ!  It’s what she has known her whole life!

In 2019 we spent Tess’s winter break in Pittsburgh going through a rigorous medical and emotional assessment to evaluate her for a lung transplant.  At that time, she was not quite ready to be listed for a transplant, but we were on constant pins and needles because her health was declining. Your past support has helped drugs like Trikafta become a reality and make a tangible difference in Tess’s life, and it’s a difference that has helped all of us breathe easier. However, there are still 10% of CF patients that this drug doesn’t work for. In addition, CF patients like Tess, are resistant to many antibiotics. Trials are underway for new therapies -  so we continue to raise money at the grass roots level, because it helps!

Thank you!!

Mary, Mike, Tess and Taylor Michaels
4953 Limehill Drive
Syracuse, NY 13215