Our daughter is Alexandra. She was born in April 2013. Alex was diagnosed with Cystic Fibrosis when she was 2 weeks old. It was easily the most difficult day, week, month, year of our lives. Having a newborn is hard enough: sleepless nights, feedings 24/7, crying… but getting that kind of diagnosis on top of it – well, it was hard. Fortunately, we are lucky to have an amazingly supportive family. They have rallied behind us and we have started the fight against this disease together.
I remember getting in touch with the CF Foundation not long after we received Alex’s diagnosis. I remember feeling immediately grateful and relieved to have such a wonderful contact source of information for the Foundation.
Without the Cystic Fibrosis Foundation, I do not know if our family would get to enjoy our daughter like we are today. There have been so many advances in the research and treatment of CF. Vertex and other pharmaceutical companies have some very exciting trials going on right now. There are some exciting treatments on the horizon. Almost all of these studies and trials have been supported and funded by the CF Foundation. This couldn’t be done without your support.
The face of this disease is changing. More and more states are adding this to their newborn screening panel so kids (like Alex) are being diagnosed early and getting the treatment they need. People are advocating for better drug coverage so that they can obtain and utilize all the treatments out there. In the 1950s, very few kids with CF lived to go to elementary school. In 1985, the median age of survival was 25 years. In 2007, the median survival age was 37.4 years. In 2012, the median age of survival was 41.1. Now, those with CF are expected to live beyond. We are moving in the right direction! We are able to do this because of everyone who chooses to participate in Great Strides; because of all the fundraising efforts out there; because of the countless hours that those with the Foundation spend fighting for all the CF patients out there; because of all this, we are able to enjoy our daughter more and more each day. Since 2013, we have raised over $120,000 for the CF Foundation Great Strides! So, thank you for all you do. Let’s turn CF into meaning “CURE FOUND!”
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible. **Don't forget to ask your company about their matching program!**