First, I would like to thank everyone who stops by to check on us. You have made this site have over 1100 hits and counting. We feel blessed that so many people keep up and pray for Eleanor. We have felt the prayer and support and words will not express what they mean to us as a family.
Now is the time of my family and I start to raise money for a cure to this horrible disease. We joined this effort in early 2008 when Eleanor was born. Since 2008 several new drugs have become available to the CF community. Recently a new drug called Cayston, whose research was funded by the CF Foundations money (which really means the money you gave in the past), has been approved by the FDA and is currently available to us. Had Eleanor not kicked her psuedomonas we would have been on TOBI one month and Cayston the next. This drug is a BIG deal for our daughter since she has been fighting this bacteria since she was 12 months old.
There are several drugs in clinical trials or will be in clinical trial soon that are a CURE for this disease! Yeah! I could go on all day telling you about the great things the CF Foundation does...but I will provide you with a link to check the drug pipeline out for yourselves. http://www.cff.org/treatments/Pipeline/
Here also is a link to the timeline of how the Foundation started and what it has accomplished since its beginning. http://www.cff.org/research/ResearchMilestones/
I know that money is tight and things are hard for every...trust me...just got done paying the hospital bills. :) Anything that you can give will be appreciated.
The link to my Great Strides page is on the side of this page. If you prefer to send a check to me instead of donating online please email me at firstname.lastname@example.org. We will be selling t-shirts again this year. You can email me with questions about those as well.
Coleen, Robert and Eleanor