Cystic Fibrosis Caucus

My meeting was scheduled very quickly with Representative Rodney Davis. In fact, it was the day after my last post! He came to town and I met with him and an assistant of his privately. I was very appreciative of his time and that he didn't rush me or make me feel like I was "just another person". He was supportive of CF research and was already a member of the Rare Disease Congressional Caucus. He also said that he will join the Cystic Fibrosis Caucus as well. Thank you Mr. Davis for your time and for promoting Cystic Fibrosis awareness. It is greatly appreciated. 

If you are interested in being an advocate for Cystic Fibrosis, here is a link that will give you basic steps on how to get the word out about the importance of CF research and support that is needed - CF Advocate . Remember, only about 30,000 people in the United States have been diagnosed with Cystic Fibrosis and 70,000 worldwide! CF'ers like me need your help, so please consider it. 

I appreciate everyone who supports me and other CF'ers no matter the way you show your support (prayers, advocacy, monetary donations, cards, emails, etc.). It's all very much appreciated and a promise that I will get to live longer days which will include more healthy breaths.

To view Jen's full blog and/or to contact: Jen's Breath of Life

August Update

Two months later and I'm still getting in medical bills from the "unnecessary" emergency room visit from two months ago. I'm sure some of you can relate to this kind of experience. I'm very thankful that I have insurance that helps cover a portion of it. For what little time and treatments I received, I can't believe the cost it has amounted too.

A good neighbor friend of ours brought over an article from "Discover Magazine" regarding updates on Cystic Fibrosis research and new medicines in the works (Sept 2013 issue). It's a good read if you have time and are interested in the developments taking place. I recently sent a request to meet with my State Representative to discuss my concerns about Cystic Fibrosis and continuing funding and healthcare coverage. I am currently waiting to hear back from him.

I can't believe it's August already! This summer has by far been the fastest one I can remember....yes even from when I was a kid in school. :) I hope that all of you have been able to get some free time with friends and family.

I know most readers of this blog receive it by email, but if you wanted to contact me, please go to my blog page and look on the right side of the screen for a form to email me. I'd love to hear from you. Even if I've never met you! Click: Jen's Blog. As usual thank you for all the thoughts and prayers. Jen :)