A message from the Michaels family:
My Great Strides Story
Hello friends and family!
It’s hard to believe, but you’ve been receiving some form of this letter for the last 20 years! Tess was diagnosed with cystic fibrosis at 14 months old. Over the years, we have shared manyups and downs including countless hospital stays, the placement of a feeding tube to keep her nutrition up, a diagnosis of CF related diabetes, port access upkeep, lung transplant consultations at the University of Pittsburgh Medical Center and innumerable daily medications.
Because of CF research and your support of our fundraising, Tess continues to respond to the drug, Trikafta, that you might remember she started taking during her sophomore year of college before it was even approved by the FDA because of the severity of her decline in lung function. This drug works at the cellular level and impacts Tess's disease mutations. It has allowed her to live a cautious, but rather typical, life of a 22-year-old.
Because of this life-changing medication, Tess has graduated from SUNY Brockport with her BS in Public Health! She began her career with a new job in Syracuse at Cancer Connects, a non-profit giving back to patients receiving cancer treatments. She has an active social life that includes joining a golf league, going to the gym and hanging with friends and frequent visits to her alma mater. She also continues to be a role model for her younger sister, Taylor, who is a freshman at SUNY Cortland.
The big news for Tess this year is that she’s finally been able to have her feeding tube removed, that has had since age 11! This is a huge milestone!
While her lung function has remained steady, she still must keep up with a daily routine of breathing treatments and medications.While Trikafta is a game changer, it still isn't a cure. It doesn’treverse the scarring in her lungs. There is still approximately 10% of the population that this life changing drug can't help, so we continue to search for a cure.
Your support has given our family so much hope over the years, even when we were feeling hopeless. We hope you’ll continue to support our fight against CF. Your past support has helped drugs like Trikafta become a reality and make a tangible difference in Tess’s life. We will stay in this fight until there is a cure for everyone with CF, and we hope you will continue to fight along with us. We again ask that you please click the link http://fightcf.cff.org/goto/TeamTess2023 or snap a pic of the QR code with your cell phone camera to join Team Tess and consider a donation to the Cystic Fibrosis Foundation through Team Tess. We would love to have you join us on May 13th for the Great Strides Walk at Willow Bay in Onondaga Lake Park. 9am registration, 10am Start).
Mary, Mike, Tess and Taylor Michaels
4953 Limehill Drive
Syracuse, NY 13215