May is Cystic Fibrosis (CF) awareness month! For over 13 years, I have been fundraising for the Cystic Fibrosis Foundation and this year is no different. On Saturday, I am walking with HOUSE TULLY at the Austin Great Strides Walk. Here is my story of why I am so passionate about this cause.
I was first introduced to CF back in college when I babysit twins – Maren & Berne - affected by the disease. Every Wednesday I would pick them up from Kindergarten and bring them home to do breathing treatments, chest physical therapy and medications. CF is a disease that causes the mucus in your body to become thick and sticky which primarily affects the lungs and digestive system. The thick mucus causes lung infections, makes it harder to breathe and affects nutrition absorption from food. Back then the life expectancy was about 37 years old.
In 2013, I followed my nonprofit career and got lucky enough to land a job with the CF Foundation where I stayed for 9 years. Working for the CF Foundation gave me an inside look on the INCREDIBLE work of the Foundation. I met many people with CF and their families and saw how the money raised was helping develop drugs that improved their lives. The progress has been incredible!
- Just a few weeks ago, the average life expectancy was raised to 56 – WOW! (20 years difference since when I started)
- Much of this is due to the drug Trikafta which has been a life-changing drug available to 90% of the CF population age 6 & over.
- Just last week it was announced that Trikafta is NOW approved for ages 2 & over!!!
While this drug has changed lives – it’s not a Cure there and there are still people who do NOT benefit from the drug. We must keep raising funds UNTIL IT’S DONE and there is a cure for all people with CF.
Over my time I have made true friendships with the CF families I worked with. This year I am walking with House Tully. My incredible friend Jaclyn has two daughters – Frankie age 5 & Cora 1.5 with CF. Both girls have been hospitalized multiple times in their short lives and deserve a future where they don’t have to work about daily treatments, weight gain and can just be kids.
I promise you – when you donate to the CF Foundation, your dollars are TRULY making an impact and giving many people I care about a chance to live longer, healthier lives.
To top it all off, Maren & Berne - the Kindergarteners I babysat for in 2010 are graduating from HS this month! Berne plans to attend Iowa State University and Maren is excited to go to the University of Iowa. I can't wait to see what they will do!