Clinical trials...all smiles!

I felt the urge 2 days ago to contact a woman that reached out to Larry and I after getting Ayla's diagnosis of Cystic Fibrosis. She works with the Cystic Fibrosis Foundation and I hadn't really been able to receive all the information I was given at that time in my life. It was all still setting in that this was really happening to us.

So 2 years later I felt compelled to give her this blog address and ask her how things are going with the foundation and fundraising.

THIS IS A PORTION OF WHAT SHE SAYS IN HER EMAIL: "I can tell you that advancements have occurred in the past 2 years. We are currently testing several drugs that indicate it may be possible to correct the CF defect in the gene. We believe these have the potential to stop the cascading effects of cystic fibrosis, which will, in turn, add decades of life to those with CF.. Dr. Beall (at CFF headquarters) likens it to what asthma looks like today. If we can control CF in a similar fashion, people born with CF will have normal life spans and will die with CF, but they will not die from it.
The drugs mentioned above are in pill form (yea!), and could be available to CF patients in 4-5 years. It is an exciting time for those of us who have been working toward this for years (I am finishing my 12th!) The more people we have helping fund this research, the sooner it can get thru the trials and on to FDA approvals."

Seeing these words coming from a person I trust, was amazing. I began to imagine life for a second without all the fears and stigmas of "chronic condition" & "life spans."

The next thing I did was forward that email to my family to share this great news.

And then the last sentence of those words kept playing in my mind: The more people we have funding this research, the SOONER it can get thru the trials and on to FDA approvals.....

I really feel like there is something I can do to help get this new medicine in our hands. I can fund raise! I can build a team....why not call it.....team Ayla (thanks mom)..and i can do things year round to raise money for the foundation.

I am going to work on getting the needed information from the foundation this coming week. I am getting really excited about what I can do to cure CF. And I hope you are to. Watch for upcoming posts regarding fund-raising!