Thanks to the hard work of many people before us Elizabeth has not been hospitalized in 6 years, is the same height and weight as her twin brother without CF and has not had to scale back her activities because of her disease. We are SO GRATEFUL! However not everyone with CF is sharing in our success. Many people already have advanced lung disease and still others are not able to benefit because of their genetic type of CF. Elizabeth’s treatment is not a cure! She requires daily diligence to her therapies to maintain this success.
The CF Foundation ensures that the movement toward a cure continues. They also work tirelessly to advocate our lawmakers to protect everyone's access to quality, affordable healthcare. They provide assistance to navigate the insurance system and coordinate the care centers to make sure everyone receives the best possible care. They are a model for other foundations on how to turn a fatal childhood disease into a chronic condition in many cases. I don’t even like to imagine where we would be without them. We there for support them in any way we can. I lead the volunteer advocacy for IL. We all participate in fundraising of course. Elizabeth has now started volunteering for research efforts to keep the developments moving forward. Some of these involve uncomfortable testing and tons of blood draws. I have said to her after some tearful moments that you don’t have to participate in these test. She has told me every time that she really wants to keep going because she knows it will help other little kids. It is a pretty big sacrifice for a 7 yr old to make. I hope you will support her efforts as well. Your financial donation, volunteered time, and response to advocacy alerts are all changing our lives and many others like ours for the better every day! We can thank you enough and will be forever grateful to you.