Wow what a year 2020 has been so far! With everything cancelled, wearing masks, staying at home, online shopping, virtual and hybrid schooling, this is all new to everyone. Not sure when and how we will be when our everyday living will be “normal” again.
I wanted to send out an update about our fundraising efforts this year. Since the Great Strides Walk was held virtually, I was holding out to have an actual Cystic Fibrosis Cycle for Life ride and fundraise for my Dad, Shane, to be held in September, but that didn’t happen either. I did, however, fundraise for Cycle for Life and congratulations to all we raised over $17,000. I want to thank everyone who made a donation and to my dad’s friend, Jon Stunja for hosting his golf outing this year to help us reach our goal this year.
Your generous donations and support have provided monies for research for the latest new drug, Trikafta. Last Thanksgiving Day I received this drug. This is the new drug that everyone has been waiting for. This is the first triple combination CFTR modulator therapy for Cystic Fibrosis. It was approved for all individuals with CF, 12 years or older, who have at least one copy of F508del mutation, thereby providing a therapy to nearly 90% of those with CF. I have two copies of F508del. I take two pills in the morning and one in the evening – 12 hours apart.
This new drug has made a significant change in my life. I feel terrific and my lung function has been the best ever and my overall health has been excellent even during these trying times of Covid. During the lockdown in the spring, I did online school, it was difficult as I missed seeing my friends and grandparents. I did Zoom calls so I could see everyone, but it was just not the same. I have my own circle of friends who I feel safe with, but still watch when I go out because Covid can be dangerous for me. I’m still doing online school, while my brother, Oliver, goes two days a week in school and online three days. I can’t wait to get back to normal and be with my friends.
I look forward to hearing or seeing you during the coming year. I understand that this has been a difficult year for many people this year and we totally understand. Remember that donations can be made throughout the year and sent to my Mimi for Sadie’s Soldier’s Great Strides Team for this year – 505 Wedgewood Court, Harmony, PA 16037.
Again, my deepest THANK YOU from the bottom of my heart. Keep watching for my letter in the spring.
Remember that money buys science and science buys life!
Lots of Love and Kisses Always,
Sadie, Shane, Abby & Oliver
Thank you for supporting Sadie and her Sadie’s Soldiers Great Strides fundraising for Cycle for Life. Stay safe and stay healthy.
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.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.