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 page and pick a team mate to support: http://fightcf.cff.org/goto/TEAMTESS2021 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. Take a look back at the incredible progress you’ve help us make over the last 20 years, and THANK YOU for helping to raise over $700,000 and impact the lives of thousands!
Thank you! Mary, Mike, Tess and Taylor Michaels 4953 Limehill Drive Syracuse, NY 13215
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.