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June 25, 2010

My 4 year old daughter has EE. My daughter was failure to thrive before her 1st birthsday. After many tests, pokes, Dr. visits, super sick days----we finally had an answer EE. I said to myself as a new single mother, what in the world is this. I asked many questions to Dr. and family members in the medical field, I then found out about APFED. What a wonderful organization held together by great people. After a few years on an elemental and elimination diet we have become professional label readers and cooler packers. I have met several people through APFED and learned a whole lot about "trials" and "tribulations" in dealing with EE. I have no other children and was the first of my friends to have a child so I do not look at this disease as diificult or hard, I look at this day to day life as normal. I have told my daughter many times God only gives special people that can handle this kind of stuff these diseases. I have learned the most valuable information from the conferences and encourage all families to attend them every year. Good luck to all and God bless.

The Great!

I've personally experienced the results of this organization in...

The open blogs- talking to other families The conf.

Ways to make it better...

If I had to make changes to this organization, I would...

Change nothing

More feedback

What I've enjoyed the most about my experience with this nonprofit is...

the mess board, and the conf.

The kinds of staff and volunteers that I met were...

Always full of information

If this organization had 10 million bucks, it could...

maybe come up with a cure

Ways to make it better...

this organiztion had more donors and could educate the world and make EGID's a household name

In my opinion, the biggest challenges facing this organization are...

raising money and getting donations

One thing I'd also say is that...

I love APFED

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


General Member of the Public & Learned valuable information.