APFED

Rating: 4.94 stars   83 reviews

Address:

PO Box 29545 Atlanta GA 30359 USA

Mission:

American Partnership For Eosinophilic Disorders (APFED) is a non-profit organization dedicated to the patients and their families coping with eosinophilic gastrointestinal disorders. APFED strives to expand education, create awareness, and support research while promoting advocacy among its members.

Results:

Over this past decade, APFED has made a huge impact in all areas of its mission: education, awareness, support, and research. - Educated patients, families, healthcare providers, and the public about eosinophilic disorders and how to manage them. - Initiated groundbreaking advocacy efforts on the state and federal levels to help families secure insurance coverage for medical foods, and encouraged our governments to direct more funds to eosinophilic research. - Played a critical role in encouraging the development of comprehensive guidelines for the diagnosis and treatment of eosinophilic esophagitis. - Led the effort to develop ICD-9 codes for eosinophilic gastrointestinal disorders, which are crucial for insurance coverage of therapy and for ongoing research. - Authored the bill for National Eosinophil Awareness Week (third week of May) and worked with the community to get it passed. - Participated in the NIH working group that was assembled to define unmet research needs for eosinophilic disorders, and we were instrumental in publishing a report on these findings, charting the course for scientific breakthroughs. - Thanks to the generosity of our supporters, APFED’s Hope on the Horizon Research Fund has granted nearly $1 million in support studies that are leading us to a better understanding of eosinophilic disorders, less-invasive diagnostics, and improved therapies. We have teamed up this year with the Allergy, Asthma & Immunology Education and Research Organization, Inc. (a supporting organization to the American Academy of Allergy, Asthma & Immunology, Inc.) to offer a APFED/ARTrust™ Pilot Grant Award. This collaborative award will allow investigators from a variety of disciplines to initiate new projects relevant to eosinophilic disorders, focusing on the development of ideas which are likely to lead to future external funding.

Target demographics:

fund research for Eosinophilic Disorders

Geographic areas served:

Global

Programs:

HOPE Research Grants Trainee Grants Education Programs Advocacy Programs

2015 Top-Rated Nonprofit
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More Info

713-493-7749
www.apfed.org

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Reviews for APFED

Rating: 5 stars  

APFED is an AMAZING site! The sample 504 plan served as a great tool, when developing our daughter's 504 plan.

Our daughter was diagnosed with EoE at the age of 3. Her sporadic and inconsistent vomiting convinced us that an endoscopy was necessary. Her preliminary results showed eosinophils in her esophagus. She was on a food restriction diet of: cow milk, soy, gluten, egg and apples. Her condition was not improving, in fact, minor scaring was taking place in her esophagus. Since this, we decided to put her on the Flovent treatment plan at the age of 5.

Her first year on Flovent was great! All of the eosinophils in her esophagus were wiped out and/or suppressed. and the rest of her body was pristine. Then, about 15 months into the Flovent treatment, symptoms began arising, again. She had an out-of-routine endoscopy, that showed fungus in her esophagus. The fungus was a side-effect from the Flovent.

She immediately had to take medication to get rid of the fungus. About 3 months later, she had an endoscopy. She was still vomiting, infrequently, but enough for us to know something was not right. This endoscopy showed that she now had eosinophils in her stomach lining. Her treatment plan now included the Flovent for her esophagus, and now an antacid, for her stomach lining.

Our daughter is scheduled for another endoscopy at the end of October, 2015. If there are any signs of eosinophils and/or fungus, she will immediately go on a top 8 food restriction diet. Our daughter is now 7 (soon to be 8), and we are still pretty frustrated, overwhelmed and sad. I definitely cry, a lot, when I'm alone.

It would be very helpful to have a support group in the immediate area of Westchester, NY. Going into Manhattan, is just to practical for a mom of 3, who are 7 and under. I did meet with Julie Forrest, and she is GREAT!!! We are currently in the developing stage for a eosinophilic disease fundraiser, in Westchester County, NY.

Thank you for your existence, APFED!

 
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Rating: 5 stars  

My daughter was diagnosed with EoE (Eosinophilic Esophahitis) at age two. Our doctor at the time didn't really explain my daughters diagnosis and wasn't very aggressive with it. With out Apfed I would have never known what was intaled with my daughters diagnosis. It helped me find a new doctor that only treats EoE. They also helped me with planning my daughters 504 plan. We recently participated in APFED's Hope on the Horizon walk and got to me new friends. With out APFED and all of their wonderful volunteers, I think I would still be left in the dark about my daughters diagnosis. Thank you APFED and your volunteers for everything you do for us!!

 
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Rating: 5 stars  

1 person found this review helpful

When my son was diagnosed with EE more than a decade ago, there were scarce resources on the topic. When I found APFED, I had a place to connect with other parents and learn more about the disease. Since this is a rare condition, the ability to find online resources is key, and APFED fills that need marvelously. Since then, with my son's condition under control, I have been able to support the organization and give back in other ways. I can't think of a better organization to support!

 
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Rating: 5 stars  

Apfed is a priceless asset to the EOS affected community nationwide. Through education, resources, facts, and bringing people together, Apfed strives to help everyone coping with EOS disorders. Apfed is also a great organization to team up with to raise money for the cause. They are easy to work with and very helpful!

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

15 people found this review helpful

Two of our grandsons at the ages of 2 and a half years have been diagnosed with Eosinophilic Eosophagitis. After the initial shock and denial, we have decided to learn more about this life-altering disease and enhance our awareness. APFED has helped us immensely through their well-organized Educational Conferences and their updated Newsletters. During the conferences, we were able to meet and talk with Professionals from all over the United States who are working towards finding appropriate treatments for these rare diseases, learn about nutritional plans and understand the social and emotional inpact of these diseases on the lives of children affected by EE and EGID diseases. APFED has also helped several families find support systems and connect them to appropriate services. APFED has been working diligently to obtain funding for Research and finding treatments for these life-altering diseases.

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

Educating patients and their families, establishing support systems, engaging professionals, raising funds for Research and cure of EGID diseases.

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

Organize Webinars to disseminate updated information.

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

Patient Education Conferences, News Letters.

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

Very knowledgeable, dedicated and hard-working.

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

Fund Research and help finding a cure for EE and EGID diseases.

Ways to make it better...

APFED organized Webinars periodically to update information.

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

Indadequate recognition and awareness of the EGID diseases, and lack of funding for Research to find a cure.

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

Twitter Party was not very helpful.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010-4-01

 
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Rating: 4 stars  

12 people found this review helpful

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.

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.

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

make the website more user friendly.

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.

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

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010-5-01

 
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Rating: 5 stars  

15 people found this review helpful

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!

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.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2009-1-01

 
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Rating: 5 stars  

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

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

Saving my grandson

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

None It is wonderful

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

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

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?

2010-6-01

 
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