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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

June 22, 2010

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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

June 21, 2010

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June 21, 2010

Both of my boys were diagnosed with eosinophilic esophagitis in April 2008. APFED's educational pages helped our extended family understand the medical condition and what they could do to support us as we initiated a difficult to maintain treatment plan. I attended APFED's annual patient education conference in July 2009. That weekend was one of the most amazing experiences of my life! Some of the top physicians and researchers in the fields presented information that has enabled me to advocate more effectively for my children's needs. Hearing the stories of other families with similar circumstances helped me feel less alone. I simply cannot imagine how difficult it would be to manage my children's medical needs without APFED!

The Great!

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

Informational materials (web pages, brochures, books, etc.), patient education conferences, development of ICD-9 codes, and the maintenance of a list of physicians self-reporting knowledge of eosinophilic disorders have all positively impacted my family.

More feedback...

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

meeting and interacting with other eos families.

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

invested in APFED's mission and the community that it serves.

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

eliminate physical and psychological pain for children through funds dedicated to research, education and advocacy for patients with eosinophilic disorders.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

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June 20, 2010

APFED helps support families and patients living with Eosinophilic Disorders in many ways. They provide education through yearly conferences for families and for health care providers. They help raise awareness through education for physicians as well as patients and their families. In addition they are supporting researchers, as well as encouraging young researchers to become involved in finding new and innovative ways to further research for Eosinophilic Disorders.

The Great!

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

Seeing the addition of ICD-9 codes representing Eosinophilic Disorders, which APFED wrote, presented and fought for, to ensure that my patients are counted appropriately.

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010
1 person found this review helpful

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June 20, 2010
1 person found this review helpful

Where do I start? When my son was almost 2 he had a endoscopy and colonscopy and I was told he had eosinophilic disorder. I didn't know what to do next. Thru researching on the computer we found APFED. Thru APFED I found the RIGHT medical people for my son. My son was given the right medicine. By going to the APFED conference I found out more about his disorder, what they were researching and could hear other families going thru the same thing. They are my second family. We help each other. Without APFED we would not have a National Eosinophilic Awareness week. We would not have medical coding. They also raise monies for research. APFED saved my eos son and many others. Thank you APFED.

Photos

The Great!

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

Helping my son be at the right hospital getting the right care. Caring about every eos kid no matter where they are seen. They help eos kids who go to different hospitals all over.

Ways to make it better...

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

More monies since we are not on the list for NIH for any federal funding.

More feedback...

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

That when my eos child ever has an issue I can turn to them and get help in a minute.

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

wonderful and now part of my extended family.

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

use it the right way. In giving it to research at ALL the different hospitals and raising awareness.

Ways to make it better...

they need more money for research and for awareness.

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

That we need more money so that they can do more good for ALL the hospitals that are doing research.

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

without APFED I would truly be lost. I am blessed to have found them and thank them everyday. Last year when my son was 6 he held a fundraiser for APFED and again this year. Why? He wants all his eos friends to eat pizza one day.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

more

June 20, 2010

My son was diagnosed with a rare disease called eosinophilic esophagitis. Even his own doctors had no idea what this was or how to treat him. With APFED's help we not only educated his doctors but also have educated thousands of people in the community that had never heard of this before. It is only through awareness and education that we can find funding for research and ultimately a cure for the people who suffer from this. Through Apfed, I have met so many wonderful families that are going through this and I now know we are not alone in this fight. I thank God every day that Apfed goes out and fights for funding, educates the physicians so they know to look for this, and helps families who are struggling with this diagnosis.

The Great!

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

every aspect of our life. Without them there would be no coding for a diagnosis so our insurance could help pay for the medications and supplies we need to keep my son alive. They also provide training for the medical community.

More feedback...

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

the support they provide for families struggling with the diagnosis of a rare disease.

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

the most caring and knowledgeable people I have ever met.

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

teach the world about this disease that robs our children of the ability to eat and causes so much pain. They could donate enough money to researchers to find a cure for our children.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

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June 20, 2010

APFED is great and helps change the lives of many. It doesn't need improvements; only funds to help find a cure for this disease and get further research on how they can help those who have it.

The Great!

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

.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010
1 person found this review helpful

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June 20, 2010
1 person found this review helpful

Thank you APFED for saving my grandson. He is now 7 and was almost 2 when my daughter was told he had an eos disorder. Without APFED we would not be going to the right doctors. Without APFED she wouldn't know all the different medicines by going to the APFED conferences. They have saved my grandson. I love how they do research AND raise awareness. APFED got a National Eosinophilic Awareness week passed. APFED got medical codes passed. APFED raises money for research. My 7 year old grandson did a fundraiser for APFED for other eos kids. THANK YOU APFED! From an eos grandma - Eileen

The Great!

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

Saving my grandson

Ways to make it better...

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

None It is wonderful

More feedback...

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

that everyone is caring and helpful. They want the best for ALL eos kids no matter where they go.

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

wonderful

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

find a cure and raise more awareness.

Ways to make it better...

It is perfect the way it is

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

APFED saved my grandson and many other eos kids. Thank you! Before they came about medical staff did not know about eos disorders. APFED has raised awareness so that medical staff knows about this disorder.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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