Friday, January 15, 2010


One of the hardest aspects of dealing with Cystic Fibrosis is the isolation.

Because certain bacteria can reek havoc on a CFers lungs (and this bacteria can be spread by contact) it is advised that they don’t come in close contact with one another. Depending on who you talk to, it can be anywhere from a 3 foot to a 10 foot rule.

Therefore, the internet is an amazing place for CFers and their caregivers to avoid that isolated feeling as much as possible.

Ronnie came up with a great solution. A social networking site called which was launched just a few days ago. It has a similar concept to sites such as Myspace & Facebook and has created a way for those with CF, their friends, family and caregivers to have educated conversations, fun chats and to create connections. More CF awareness & and less isolation from one another…not sure if it can get much cooler than that.

In just three days, Ronnie had over 500 members on his site.

How amazing is that.

I also thought that I “knew” of the other local families dealing with CF…but on my second day on the site I connected with two local families I wasn’t aware of. One has a son just a bit older than Gavin. What an amazing place to find support.

I just want to give Ronnie a big (((THANK YOU))).

You are such an inspiration in so many ways. I know I’ve said this many times, but I can never say it enough…I truly hope that my son can grow up to be just like you!

So whether you are afflicted with CF, are a parent, grandparent, aunt, uncle, friend, or just know of someone who lives with CF, head on over to CysticLife!

1 comment:

  1. Thank you for that very kind write up!! Just please keep in mind, it's just as much your site as it is mine. :)