There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I am fundraising for my beautiful niece, Tess and others affected with Cystic Fibrosis.
Tess was diagnosed with CF at 14 months. Over the years there have many ups and downs. Some of her challenges have included hospital stays, lung transplant consultations traveling to UPMC, a Pittsburgh Hospital , feeding tube nutrition, CF related diabetes, port access upkeep, and countless medications on a daily basis.
Because of CF research and our continuous fundraising, Tess continues to respond to a rather new drug called Trikafta. She started taking this sophomore year of college. This particular drug works at the cellular level with Tess's disease mutations. It has allowed her to live a cautious, but rather typical life of a 22 year old.
Because of this life changing medication, I am excited to share that Tess has graduated from SUNY Brockport with her BS in Public Health! She began her career with a new job in Syracuse at Cancer Connects, a non profit giving back to patients receiving cancer treatments.
She has an active social life that includes many friends. She has also been able to work part time at a chic boutique and continues to be a role model for her younger sister, Taylor, who is a freshman at SUNY Cortland.
Big news for Tess is that she has finally removed her feeding tube that she has had since age 11!
While her lung function has remained steady, she still has to keep up with a daily routine of breathing treaments and medicine. While this drug is a game changer, it still isn't a cure. There is still approximately 10% of the population that this life changing drug can't help, so we continue to search for a cure.
Thanks for helping and supporting us while we continue to fight for a cure for all with CF!
Farrell & Carol Sutherland
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