Hello friends and 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!
Your past, present and future support means the world to us. We hope you’ll stay in the fight with us until there is a cure for everyone with the disease. We would love to have you walk side by side with us on May 4th for the Great Strides Walk. It is at Willow Bay in Onondaga Lake Park, 9am registration, 10am start.
Thank you ALWAYS!!
Mary, Mike, Tess and Taylor Michaels
4953 Limehill Drive
Syracuse, NY 13215
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.