The good news is that thanks to Karen, Eyal, Bob, Joyce and our wonderful technical team, our new seizure freedom diary is live on the site this week. The bad news is that I just received a text from Sylvie's mom that at 6:30 tonight Sylvie had a "giant tub seizure and then two hour nap." Giant seizures in the tub are not a happy way for our girl or her parents to wrap up the weekend. Thank god her mom is ever vigilant!!

I was actually on the phone with our thoughtful community member Jeanette talking PR around the new diary when I received the text from Kathy who had travelled to her parent's house with our two girls, taking advantage of the school holiday respecting Yom Kippur tomorrow. After talking to Kathy who assured me that everything was alright, we talked about the new diary and about creating an account for Sylvie that I could use to record Sylvie's seizures as could Kathy, her teacher Lori and our wonderful caregiver and general family helper Cristina. And I got online and recorded this event.

I think it is easy to use. And it is mobile, with an iPhone icon and the ability to make entries from any cellphone. I hope it will be helpful to our family and to Sylvie's doctor by giving us a better record of Sylvie's seizures, maybe helping us find patterns and gain better control as we adjust medicines and timing of meds. And because all of the individual data entered will be aggregated (on an anonymous basis) into a broad database for research use, I hope the outcome might be broader insights which can help drive the development of new therapies that work for the all too many Sylvie's out there living with uncontrolled seizures and in too many cases god awful side-effects from their meds besides....