EB Awareness Week

I’ve written about this before…my daughter Christina has a rare skin condition called Epidermolysis Bulosa (EB) which basically means that she’s missing a protein in her skin that allows her to absorb friction like the rest of us. As a result she blisters. Sometimes she can walk, other times she needs a wheelchair. She’s probably always going to need a wheelchair for certain places where lots of walking is needed…a big school campus, the Mall, the airport or Disneyland. The truth is, she’s got the mildest form of EB. She’s going to lead a fairly normal life. The video above is about an amazing family that we know who have a son with the worst form of EB. The Spauldings are truly inspiring!

Since this is the national EB Awareness Week, my wife Lesley is planning a fund raiser next Saturday the 23rd with the theme “Eat Ice Cream for EB”. It’s going to be at a place called Sweet Connections in San Bruno. It’s at 430 San Mateo Ave, right next to La Petite Baleen Swim School. It’s going to go on all day long, so if you get around to it, stop by for some ice cream and contribute to an incredibly worthy cause.

Speak Your Mind