Do you believe it’s been 21 years of Team Tess with the CF Great Strides Walk? We would love to have you join us again May 14th at Willow Bay in Onondaga Lake Park. Check-in 10:00, Walk 11:00.
Tess’s health has been so much better since starting Trikafta in August of 2019. You may remember that this was the drug that we had been waiting for that treats the underlying genetic cause of CF. During her first in-person doctor’s visit since Covid started with her CF care team, her lung function was up 10 points compared to 2 years ago. THAT’s a BIG deal! Also, this week she had an appointment with a surgeon to remove her g- tube she used to need for extra feedings, which she’s had since she was 12 years old. However, she is still tasked with making sure to eats more food because she burns extra calories even by just breathing – but the joy that has brought her has been amazing.
We are so proud that she is graduating from SUNY Brockport (the day before this walk!) with her BS in Public Health! She still has an internship, and she hasn’t decided if she will continue to grad school or look for a job in her field. The opportunities we were afraid to dream up! She also has been able to work part time at a chic boutique called Synple. Her school breaks in the past used to entail follow up appointments with Lung Transplant specialists. Needless to say, we are hoping to continue the healthy streak!!!
Tess hasn’t had a hospital stay in the last two years! (Knock on wood). You may recall that for many years, she was being admitted for IV antibiotics every few months. She has had some kidney stones, which is common for people with CF, but no IV antibiotics lately - which is a HUGE win! And, in other exciting news Taylor is graduating from high school in June and off to SUNY Cortland in August. We’ll officially be empty nesters!
Please snap a pic of the QR code or click on this link: http://fightcf.cff.org/goto/TeamTessSyracuse2022 to join Team Tess and consider a donation to the Cystic Fibrosis Foundation through Team Tess portal. We are always so grateful for your support over the years because it has truly helped drugs like Trikafta become a reality and make a tangible difference in Tess’s life - and our lives as caregivers. 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. Thank you ALWAYS!!
Mary, Mike, Tess and Taylor Michaels 4953 Limehill Drive Syracuse, NY 13215
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.