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. I will never forget that phone call I received from my sister, Mary in 2001 with this news. Over the years there have many ups and downs. Some of their challenges have included hospital stays, lung transplant consulations, feeding tube nutrition, CF related diabetes and countless medications. Because of CF research and our continual fundrasing, Tess responded very well to a rather new drug called Trikafta. This particluar 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 21 year old.
I am thrilled to share that Tess is planning to graduate from SUNY Brockport in May with her BS in Public Health! She has an active socail life that includes many friends. She has been able to work part time at a chic boutique and has become besties with her younger sister, Taylor. Tess is talking with her medical team to remove the feeding tube because she is able to eat more. During her last in-person medical checkup her lung function was up 10% - that is a BIG deal!
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.
Please support me!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!