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donna-taylor

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APFED
June 22, 2010

My son is 6 and has EE & EC, unfortunately when he was diagnosed @ 4 yrs the Dr did not offer much info and we had NO idea the extent of how this would change our lives. We were told to avoid a few foods and that was it. When he continued to have frequent illness and did not grow, I began to research on my own and discovered APFED. They directed me to a local group, and I cannot tell you the relief I felt to speak to people with the same experiences! Trying to explain to friends and family is impossible, and the APFED videos were a big help when family members informed me that I was making bad decisions in regards to my son's health. They've since kept their opinions to themselves, and we have surrounded ourselves with other families that are sharing in the same struggles. I can't WAIT to attend the conference, to meet moms I feel are friends, and to learn the latest research and treatment has to offer, so that I may offer my son a better future with food IN it!

The Great!

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

The amount of parents available to me to share information with, including doctors that are considered the most knowledgable about eos.

Ways to make it better...

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

??? Haven't experienced any negatives.

More feedback

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

The willingness of people to help you look for answers in a complicated, difficult situation.

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

very pleasant and helpful over the phone.

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

provide research so that my child could eat food without it making him ill.

Ways to make it better...

??

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

The fact that Eos disorders are still considered rare, when in fact they are becoming more prevalent every day.

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

Children deserve to be able to eat food and experience a normal childhood.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

MY ROLE:
Client Served & I have participated in EOS awareness Week.