Hi Everyone,
It has been a very long time since I posted!! At least a few years!! I have 4 boys and two have CAH. Jackson is now 7 and doing wonderful and Nolan is 4 and also doing great! I spent the first 3 or so years posting all the time and Danny is so wonderful for keeping this message board going over the years. It was always a great resource for me. I met lots of really great families and got tons of support when I needed it most!!
Life has gotten very "normal" but always with CAH a part of it. I am a support group leader for Cares and I'm a member of a committee that is working on a newborn screening performance measures project for Texas.
The reason for my post today is that I got a call from one of the ladies from the Texas Department of State Health Services regarding a symposium that is going to be held Nov. 3,4 and 5th. It's a celebration of 40+ years of screening. She asked me if I knew of anyone who has transitioned to adult care, that is doing well, that was caught through newborn screening that would be willing to share their story. This person would have to speak infront of about 400 people on a raised podium. So, public speaking is a plus!! They already have one person representing Sickle Cell and one for PKU. Airfare or car will be paid for as well as one night hotel. The talk is scheduled for the 4th at 8:30 so arrival would be the night before. If anyone is interested you can contact Donna at 888- 963-7111 press 1 then extension 2715. She is forwarding me an email with more info so when I get it I'll copy and post it here for anyone who may be interested.
I hope everyone is doing well!!!
Sandra
