Hello Canavan Families!

I'm the director of family services for Nat'l Tay-Sachs & Allied Diseases Association (NTSAD). We are redoing our website and I need your help with the Canavan section. I'm working on the basic disease description, early symptoms, road to diagnosis and progression. Families, like you, are our primary audience so I want the content to be family driven - not a cookie cutter description of the disease.

Please tell me your Canavan story! I'm especially interested in early symptoms, road to diagnosis and disease progression. I'll compile your stories into common themes that will resonate with newly diagnosed families. As I get deeper into the site I might contact you about sharing your personal story from a family perspective.

Feel free to post here to email me at Kim@ntsad.org.

THANK YOU!!!!

Kim

Hi Kim

Our son Ben's story is told in detail on his website www.allaboutben.co.uk  please feel free to have a look at it and copy any of the story you would like for your website.

Best wishes

Sally Fletcher & Ben

Lillianas story was jacobs cure blog in November you can use it if you still need it

paul and harleeGrace also have a website about them here it is http://www.caringbridge.org/visit/paulharleegracegaffney