My Nonprofit Reviews

mhulse37 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

mhulse37

446 profile views
1 reviews

Review for APFED, Atlanta, GA, USA

Rating: 5 stars  

My 3 year old son Jaxon was diagnosed with EE in February 2008. He was taken off all food and put on an amino acid based formula. APFED provided much needed support and information; which was critical for our family especially for the first few months. APFED has also helped us connect with support groups in both Arizona and California. APFED helps families appeal to insurance companies to get formula covered, provides outlines for Individual Education Plans necessary for schools, and organizes yearly conferences to educate and support families affected by Eosinophilic disorders.

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

many ways. My son Jaxon had three endoscopies. The last two were clean of eosinophils. Mostly due to the research and treatment funded by APFED. My son has now been clean of eosinophils for over a year, but his condition will be a hurdle his whole life.

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

Update their web site to make it more user friendly and add a section reviewing to top doctors in this field and the programs offered at each of the top hospitals researching these disorders.

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

The yearly conferences. I have attended in Chicago and San Diego. The information provided and the classes given are wonderful and I have used them for reference many times.

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

wonderful. They share their experience and knowledge of this condition and really help provide the support I needed when my son was first diagnosed.

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

Pay for the research necessary to cure this condition. Also help needy families attend APFED conferences and help pay for medical bills.

Ways to make it better...

The website was improved so easier navigation and load time.

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

funding research and educating people. Many people have never even heard of this condition until they or their child is diagnosed.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

Role:  Client Served & I attended both the Chicago and San Diego Conference.