What have I been up to this summer?
I’ve been doing a lot this summer! We started off doing the ABC thing, so I can’t give too many details, but it’s for a program called, “Everyday Health Heroes.” Please look out for it on TV and tune in! I am still not sure who referred us, or how they heard about us, but they were interested in what we were doing. So they came to our house and filmed for three days and we did another flash mob for them, it was an awesome experience to do again and see all the great support from our friends that came out to dance.
We have a lot of different projects going on with Claire’s Place Foundation; I am working on one that I am very excited about right now! It’s for CF kids. It started with this exhibit that was at the Skirball called, “A room of a 1,000 journals.” Have you heard about it? It’s so great. This guy, Brian Singer, sent out a bunch journals around the world and kept track of where they were going and who they were going to. Everyone wrote in a page in the journal about their lives, their wishes, their hopes, their day to day activities, and then when he got them all back he had this log of everyone’s lives. It went from a Duchess, an actual Duchess from Ireland, to a homeless man in Russia. It went everywhere. It was a really big and amazing thing that inspired me. So I thought, how cool would it be if we did that but for children with Cystic Fibrosis. It can’t be actual journals because of germs but, we will do virtual journals. We are having only CF people and post transplant patients with CF write in one page for the journal. We are taking all these entries together and getting them published as a book.
How am I finding these entries you might ask?
We are finding the families through Facebook, friends of friends, social workers in over 300 CF clinics that are helping us reach them. We’ve already received many entries and they are so cool! The coolest part is that they already have books like this for Cancer, Diabetes, but they don’t have any on CF even though it’s the number one genetic disease for children and young adults. There isn’t one book on it from the views of families with Cystic Fibrosis. We would love to invite any CF families out there to join. You are welcome write in and share your story. We are also trying to make a connection feature on our site that is aimed at helping CF families connect with other CF families. So much going on! It’s a constant brain storm of great projects.
Out of all the projects I think I’ve most enjoyed…
Doing the ABC thing! It was definitely a very cool experience to see how it feels to be on the other side of the camera. Really it will make such a big impact on TV because it will air nationally. It’s a little scary but at the same time very awesome. Of course the Flash mobs were a great highlight of our summer too. Teaching people our Flash mob dance and watching the little kids that came out to dance that had better coordination that most of the adults was great.
Fall is looking pretty busy too!
Of course we have big plans! Talk shows, radio shows, many exciting invitations. I recently went on Robert Flutie’s radio show called “Keeping it Real” on TanTalk 1340 Many people responded to it on our Facebook page, and it was awesome to hear the responses. I am also starting high school!!! It’s weird, I’m ready, but I thought I’d feel different, but I don’t feel any different. Like when you turn one year older, everyone says you feel different. When your turn 40 everyone expects things to be different, but really it’s just another day and you feel the same. But I’m still excited and ready for it.
Hope this update encourages you to share these exciting projects with friends and get involved. Forward it, tweet it, or Facebook it for your friends so we can spread the word and support all these exciting projects. I appreciate all of your support!!! Have a great last few weeks of summer.