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June 26, 2010
1 person found this review helpful

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June 26, 2010
1 person found this review helpful

Our thirteen year old boy has EE.When our doctor gave us the diagnosis he told us to research it on the internet because there wasn't alot known about the disease.We were left feeling alone and scared.I started researching and found APFED.It saved us.We found the education and support we needed to help our son and they helped us find him the best medical care possible.Without APFED I would have gone into a depression and not have been able to take care of my son like he deserves to be cared for.They provide a conference every year full of support and new research on the disease.We are attending our first conference in Denver in a few weeks and my teen is excited to meet teens with EE for the first time.He will finally have support from other teens and this is all due to APFED.Thank you

The Great!

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

It changed our lives.We would have no support or education for our teen son or ourselves.I cannot believe the level of organization and compassion.It far exceeds our expections.

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

The information I have received has been so helpful.The support and education far exceeded my expectations as well.Thank you APFED!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 26, 2010

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June 26, 2010

My five year old grandson, Jack, was diagnosed with EE three years ago. It is a challenging condition that effects the whole family in many ways. The information and support provided by APFED hwlped us all to learn about the condition and assisted in decisions regarding treatment options for Jack.

The Great!

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

I have valuable information about my grandson's medical condition and have learned ways help him with some of the challenges he faces.

Ways to make it better...

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

make the website more user friendly.

More feedback...

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

learning both practical and medical information that can help my family.

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

I have only used their online services.

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

provide more money for publicity, education, and medical research. Finding a cure, of course, is the ultimate goal.

Ways to make it better...

the APFED website was more user friendly.

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

first of all, the fact that eosinophilic disorders are, for the most part, unseen and relatively unknown by the general public. Secondly, partly because of that situation, they face a lack of funding to achieve their mission of education and research.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

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.

The Great!

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.

Ways to make it better...

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.

More feedback...

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

June 25, 2010

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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?

2010

June 25, 2010

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June 25, 2010

As usual I was undiagnosed for several years. When I was finally diagnosed with eosinophilic gastroenteritis finding information about the disease was very difficult. Apfed not only provides information about the disease it also helped me learn how to live with it. It also supports research for this little known disease. It was truly a life saver organization for me.

The Great!

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

My life and health

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

My daughter was diagnosed with EC, EG and EE in August of 2009. It's been an overwhelming diagnosis but finding APFED has been a huge blessing. Our doctor at Mayo Clinic actually gave us the website when they gave us the diagnosis. We have found so much helpful information on the website. My daughters favorite shirts are her eos shirts we ordered from the website.

The Great!

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

seeing the wealth of information and the support provided on this website.

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

Find a cure for my daughter and all the others affected by EGID.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

My 9-year old daughter was diagnosed just 3 months ago with Eosinophilc Gastroenterits. What a frightening thing for a mother to hear. What is it? What does this mean? What do we do? I found APFED through some information our allergist provided to me. What a relief to know we weren't alone. I had never heard of this before, knew no one with the condition, had no idea how to help my daughter. While it currently looks like her allergies are no where near as severe or pervasive as others with this disease, we are in the infancy stages of dealing with it, identifying allergies, and learning what kind of modifications we need to make. I am so excited to be attending the annual conference in a few weeks so that I have an opportunity to learn more, hear about the latest research, learn tips on coping with this disease and hear what the future might hold for us.

The Great!

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

Support, ideas on how to cope. Being relatively new, I am only just starting to see all the benefits from this organization.

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

All the information they provide

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

Fund the research needed to eliminate this disease!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 23, 2010

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June 23, 2010

Our son, has been battling Eosinophilic Disorder since he was born. Initially, we eliminated milk and soy from his diet, but he was still very symptomatic. After countless endoscopies and eliminating a few foods here and there, we reached a very difficult point in December of 2008. We needed to eliminate all foods, forcing him to receive all of his nutrients through a feeding tube. At first, he had a nasogastric (NG) feeding tube. After a few months, it was evident that a feeding tube was going to be a long-term situation. He had a G- tube surgically implanted through his stomach for his 8th birthday in March 2009. Even though or doctors explained everything to us, we still had questions and concerns. We had heard of APFED from them, and looked to the organization for help. From the videos, to the online brochures to the message boards, we were able to get answers those questions we had forgotten to ask or didn't even think of. It was through APFED that we learned of a genetic marker that is linked to EE. So when our daughter started to present symptoms of Eosinophilic Disorders, we knew the path we had to take. APFED has proven to be a most valuable asset to our family in dealing with the day to day trials of this disease, as well as the long term issues we have been struggling with.

The Great!

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

getting support and information about this difficult disorder. APFED has become a valuable asset in helping our family cope with EE and helping us educate family and friends about the disease.

More feedback...

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

the support of all of the other families. It is a great group of people all helping each other out to find their way through this challenging disease.

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

fantastic. I have had the opportunity to work with the fundraising team and they have been amazingly supportive and helpful in helping us organize and have many successful fund raisers.

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

bring this disease further into the spotlight and get many more people educated about the disease. It would also be able to help fund much needed research to help with the battle against EE/EGID.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 22, 2010

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June 22, 2010

My son was diagnosed with eosinophilic esophagitis as a baby in 2002. For three years, we didn't know a single family dealing with this condition. We felt so alone! So there we were, going to one doctor's appointment after another, receiving little concrete information, then left to go home alone and deal with it, day after day. In addition, no one around our family could relate or begin to understand the scope of what we were dealing with. We were truly isolated in a world of helplessness: What do we feed him? Is this hurting him or not? Why isn't he growing? Do we chose to put him under anesthesia again to see if he is eating safe foods? Why are people verbally judging us as if we are overreacting to simple allergies, the only thing THEY can relate to? How can I help people understand! Finally, we found APFED! Ahhh, families who know exactly what we are going through...we are not on an island anymore! Networking with other families, having our children meet others just like them (that THEY also know that they are not alone), eating or accepting formula in the many creative ways our families have developed without being judged. After taking that breath of relief, to find through APFED the information that sheds light on the scope of this challenging condition. Doctors dedicated to this emotionally charged disease. Conferences to educate families directly from doctors determined to help our precious children and adults. Working together to put into place what others take for granted: ICD-9 codes, awareness about the condition (National Eosinophilic Awareness Week), money for research!!! In appreciation for all that APFED has offered us, a group of families came together to create a video for APFED specifically to help teachers, family and friends understand what we live day to day, in hopes that they will join us with compassionate support instead of judgment. But with many informational pieces such as newspaper articles, news briefs and magazine profiles, people watch, think how sad, and move on. Our goal at the end of the video was to ask viewers to stop, hear our children, and to think about giving to an amazing nonprofit that given so much to so many!

The Great!

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

Education through the latest information, ICD-9 codes, National Eosinophil Awareness Week, fundraising for this orphan disease, grants for research, grants for families to attend conferences, and so much more.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2009

June 22, 2010

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June 22, 2010

APFED provides outstanding educational, advocacy and research support to a growing community of families and patients with eosinophilic diseases. Their generous support and tireless efforts have resulted in the approval of diagnostic codes for the eosinophilic gastrointestinal diseases, publication of diagnostic guidelines, national awareness days, research grants and annual patient education symposia. These efforts have broad reach and scope that touch hundreds of families across the world. While the infrastructure may be small, the passion and dedication of APFED is enormous!

The Great!

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

their ongoing research, education and adovacy missions.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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Assist with research of grant opportunities; proof quarterly newsletters; assist with conference planning; assist with fundraising; and many more opportunities. Volunteer