Hello family and friends!
I hope 2024 is off to a great start for you! We are gearing up for this year's Cystic Fibrosis Great Strides walk which will take place at Island Park in Williamsville on Sunday, May 19th at 11:00am. We would love to have you come walk with us and celebrate all of the progress that has been made in the last year in the fight against CF!
This has been a year of ups and downs for my dear friend KC who continues to battle CF. She is serving as the Chair of the National Cystic Fibrosis Foundation board, the first individual living with CF to fill this role. She has travelled all over the country to CFF meetings to speak with and to doctors, researchers, donors, and families about both the progress being made and the incredible potential in the pipeline right now. She is hope-personified for individuals with CF and their families. Her perseverance and success is something that gives them great optimism for the future.
Personally, KC has been battling new and stubborn bacteria in her lungs. To aggressively tackle these infections, she spent several months last summer with a PICC-line IV delivering strong medicine with significant side effects. Rather than focusing on what she was missing, she started making a list of things she was still able to experience with a PICC-line in... going to a Taylor Swift concert, riding a tandem bike with her husband Justin, going to Teen Advocacy Day in DC with her son Mac, and many other adventures.
My work as the Outreach Chair on the WNY CFF Board has allowed me to meet so many families in our local CF community who have loved ones battling CF. Hearing their stories about life-changing drugs, the incredible Lung Care Center team, a successful lung transplant, and more fuels the fire to keep working and raising money until CF stands for Cure Found!
I am also so proud to share that my 3 girls, Avery, Haley, and Addison, will be honored with the Community Spirit Award at the WNY CFF Annual meeting for the enthusiasm and creativity they bring to their Rose Up and Great Strides efforts every year. I couldn't be more proud of the way they have embraced the spirit of service and made such a commitment to the CFF!
Please consider joining us to walk on Sunday, May 19th in Williamsville. If you aren't able to walk with us, we would be grateful for any donation you would like to make to our Friends of KC team. Thank you for being a part of our efforts each year to fund research, treatments, and ultimately find a cure for CF.
With gratitude, Liza
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.