Tuesday, February 15, 2011




The only time I ever write blogs on consecutive days is when we lose one of our friends and sadly today is one of those times. When I arrived home from a Valentine outing with Doug I read that my sweet friend Emma had passed away on Valentine's morning. I had the pleasure of working with Emma and her family at the NTSAD conferences in Boston. Her brother Jake and I had an ongoing challenge in pillow fighting and it was a highlight of my stay both years. Emma as you can see is one stunning little girl. Her parents and siblings are wonderful people and I treasure their support and friendship.

Sarah Mattingly and I are working at this year's upcoming conference for Tay Sachs and there will be such an empty space without Emma and another charmer 'little Elise'. These children are such beautiful people and they bring those of us who know them into a circle of friendship.

I send my love to Emma's family and to all those whose children are sadly part of this tragic disease. In love and peace, Lynette