Well hello to our friends and family,
I can’t believe this is our 20th year of participating in the Great Strides walks (aside from 2020 due to the pandemic). Honestly, since 2020 was so difficult for so many I really considered not sending another letter this year. So why are you receiving this? Because CF doesn’t take a day off and I can’t let up either, although I completely understand if you’re not able to support us this year.
This has been a year like no other, and the fear and anxiety that people have been experiencing over the last 13+ months provides a glimpse into what our lives were like prior to the pandemic. “They have a cold. Do you have a mask? That person is coughing, should I wait for the other elevator? Do you have the hand sanitizer? Where are the Lysol wipes? That person is coughing…walk the other way, maybe they won’t notice. Did they cough in their arm? They just blew their nose – did they wash their hands?”
Thankfully, we’ve had a little break from our usual anxiety as Tess has remained relatively healthy this year and is living in an apartment in Brockport during the school year (can you believe she’s a junior?!) with four roommates. If you recall, she began taking the drug Trikafta in August of 2019 and this has been life-changing for her! Normally, she’s in the hospital several times during the winter, but she hasn’t been hospitalized in over a year which seems like a miracle! Her lung function has remained stable and we haven’t had to make any trips to Pittsburgh to further discuss transplant. Although we have stayed in touch with the team there.
I can’t thank you enough for helping to make this happen! Trikafta, the drug that has made a tangible difference for Tess as well as thousands of others, you have helped to make this possible! We are also acutely aware that this drug only helps 90% of people with the disease and that it’s not a cure. The CF Foundation is funding cutting-edge technologies, like genetic therapies, that hold so much hope for a cure and we are proud to be a part of that.
We will stay in this fight until the end, 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 follow the link to join Team Tess and consider a donation to the Cystic Fibrosis Foundation through Team Tess: http://fightcf.cff.org/goto/MaryMichaelsTeamLead Great Strides is going to look a little different this year and we’d love for your to join Team Tess at the Syracuse Great Rides Car Parade on May 15th! Once you join our team you’ll receive additional information and if you can’t join us in person, the CFF will be hosting a virtual walk on May 16th that everyone is welcome to participate in too. Taking a look back at the incredible progress you’ve help us make over the last 20 years, we THANK YOU for helping to raise over $700,000 and impact the lives of thousands!
All the best!
Mary, Mike, Tess and Taylor Michaels
4953 Limehill Drive
Syracuse, NY 13215