20 July 2009

Joubert Syndrome Conference

Tilly in the outfit we won at the conference silent auction
The embroidery is from the Joubert Syndrome logo:
"The Faith to believe, the Hope to dream, and the Love to see it through"

Sorry it has been so long since my last update... just got back from my first Joubert Syndrome Foundation conference in Cincinnati and wow! I have never been so inspired and comforted. It was amazing to be in a room full of people that truly know what you are going through! I have never felt such unconditional love and acceptance. Both Tilly and I made some amazing new friends who will be with us for the rest of our lives. I am physically and emotionally wiped out but I promise I will post more including great info I learned and some photos! Until then, take care!


LauraB said...

i knew you would end up with the dress!!!! its cute on her!

Viscouse said...

We had so much fun meeting you guys!