In my "free time"...

Recently, the social worker at MGH gave a new Rb family my contact information (I volunteered it). They had just been diagnosed, and they were in that very confused/scared/terrified mode. Talking to this family brought me back to August 17, 2005, when Joli was diagnosed. We were terrified, and reading the internet, just got more and more scared. When I did a search for retinoblastoma (almost 3 years later -- can you believe it?), I still came up with the same scary sites. I also came up with a list of support organizations that I know do not exist anymore. When we were diagnosed, I had emailed those local ones and never heard anything back :( Which, of course, made me more anxious.

So, in my "spare time", I've decided to host a website called Retinoblastoma New England. (there is currently another Retinoblastoma of New England group, but they aren't active at all!). The website is www.rbne.org and I'm hoping that it serves as a source of encouragement for new families in our area. It will eventually feature more stories from our friends in the New England area, but for now, it's a lot of Joli info.

Hopefully, somewhere down the line, I hope to make it into a fundraising group that can help families pay for Camp Sunshine travel or maybe even a little bit to help with medical expenses. But, I can't commit to that now... for now, it'll be an online source of encouragement.

Check it out when you get a chance!