Wednesday, March 11, 2009

There are a couple of EB events coming up in the next several weeks that I wanted to bring to your attention. My hope is that some of you who live in these two cities and can participate in these events. Let me know if you have any questions.

On April 11 Leslie Rader will be hosting a Fashion Show to raise money for her New Family Advocate program. As a side note, Leslie came to visit us shortly after Ella was born. She brought us several EB friendly items and gave us pointers on changing Ella’s bandages, diaper and other struggles we were having at the time. She spent an entire day with us answering our questions, talking about the future may hold and showing us the best way to care for Ella.

The next event will take place on April 23, 2009 at Park Tavern in Midtown in Atlanta, GA. The money raised at this event will benefit the Dystrophic Epidermolysis Bullosa Research Association of America (DebRA). You can visit the link below for more information.

A side note on this event, Ellie’s dad was the first person we met in the EB community. He happens to come to DC a lot for work and had been talking to a mutual friend about his daughter and her skin disease. So when Ella was born our mutual friend called to let us know about Andrew and his daughter. Much to our appreciation, Andrew happened to be coming into town that week for work. He met us at the hospital and came in to meet Ella. He gave us some great pointers on what they used on Ellie that seemed to help. He then came over for dinner and served as an incredible comfort in a very confusing time. He also helped point us to the wonderful EB support network that I have found to be invaluable! Andrew, his wife Shawn, and Ellie have become wonderful friends and have been so helpful with advice on everything from preschool to future children.

As you can see, both of these events are close to our hearts. If you live in the Louisville, KY area or the Atlanta, GA area please earnestly consider supporting these events.

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