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APFED

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Nonprofit Overview

Causes: Health

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

Community Stories

91 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

Education is empowering. When I think of Apfed.org I think of how this
Group has help me educate future teachers in America. I feel blessed and honored to have this opportunity. Thank you Apfed.org.

General Member of the Public

Rating: 4

APFED is an amazing resource and timeless repository of information! The website is full of great information to help my family.

Stephanie91

Client Served

Rating: 5

A few years ago I had not heard of APFED. I knew my youngest child had this disease called eosinophilic esophagitis (Eoe) but I only knew what his GI doctor told us about it. Through a wonderful chain of events my son was referred to a new immunologist and dietician team who met with my son and were telling me all types of treatment options that seemed radical. They also referred me that first day to APFED.org where I could read more about the disease. I was shocked to discover the we had spent years only treating symptoms (which often landed my then 8 year old
In the hospitals) and not the actual cause of the disease. Through apfed I was able to clearly see what I could do for my son at home, at school and begin to avoid all of the hospital stays. Through their scholarship programs for first timers I was able to travel to Philadelphia within months of learning of the organization, to attend their yearly conference. I had never met any other children like my son or spoken to any other parents whose children had Eoe. It was both eye opening and heart breaking to me as a parent as the panel of teens and adults with Eoe spoke about their symptoms and used very similar words as my son who often would scream in pain. Up to the weekend I had allowed a doctor who was not knowledgeable dismiss my sons symptoms and pain levels. I thought by ignoring his "drama" was helping him to get through and stop complaining. When I heard those teens and adults describing feelings of being stabbed in the heart during a flare I cried. That weekend changed our lives. I knew what needed to be done and had some ideas how to start. In the years since I have been able to travel to Denver for another yearly conference as well as attending a smaller, local break out sessions sometimes offered. We are a few years out from this eye opening introduction to apfed and I owe them so much. A representative once did a conference call with the school district to help ensure my son got the IEP he needed and was entitled to, they send out education packets to my sons doctors so they know what he has and how to treat, they give us the very latest treatment options. Most important was learning we were not alone and my son meeting kids like him! My child is feeding tube dependent and we had never met one other child like that. Now my son has a ton of other buddies like him! I can never thank APFED enough for what they did to help me
Learn to be the best advocate o could to ensure my son received the treatment he needed and deserved!

Previous Stories

Client Served

Rating: 5

I can hardly believe that it has been almost a year since I was referred to APFED. My son had been diagnosed with EoE a few years previous but both his doctor and myself were not knowledgeable about the true nature of this disease. My son (now 9) was constantly sick. I was shocked as I began to ready through APFED literature and watch their YouTube videos. These people were describing my son!!!

I was blessed to be able to attend the APFED conference last year in Philly. I was overwhelmed to say the least by the amount of information available. I left there armed with a real plan of what I needed to do for my child. On my return home we met with his dietician and his allergist (who were new for us and had told me about APFED) and what he was saying about treatment options made sense. My son does have a feeding tube. Prior to learning from APFED what that actually entailed I was beyond sated of this step. I can now say it has been a blessing. My son is now growing and no longer has symptoms of malnutrition.

As if that isn't enough, APFEDs step by step school resource info for IEPs has been a lifesaver. It is very clear and comprehensive about reasonable accommodations the school can make to help my son be a successful student. There are so many aspects of APFED that I have used or referred friends, family and teachers to that I know I am missing some part that I use. Just know that you will never be alone in any aspect of this disease once you come to the APFED website!!!

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General Member of the Public

Rating: 5

Apfed is one of those most helpful and knowledgeable organizations Ive ever dealt with. When my daughter was first diagnosed with EoE, they reached right out to me. They offered information, support and friendship. Such an awesome team of people!!!

Susan McArthur

Board Member

Rating: 5

A charity with HEART that puts patients FIRST! So grateful our family has this organization to turn to for support and information.

General Member of the Public

Rating: 5

We just went to our first APFED conference in San Diego. It was such a great experience! We learned so much and met new families, got safe foods, snacks and samples and really enjoyed our time! Besides the wonderful conference they put on, APFED has a great website to refer family and friends to re eosinophilic diseases. Besides all of the before mentioned, we are thankful for the fundraising they do to raise awareness and find a cure!

Client Served

Rating: 5

My family just went to our first APFED conference in San Diego and I am pleased to say it exceeded all our expectations. We learned so much and everyone was very nice and helpful. Our teen son met others like him for the first time in his life and made important friendships that continue online. We all felt supported in our individual journies of learning how best to cope with our child's disease. And the most valuable take away - we collectively left with a renewed sense of hope.

I highly recommend APFED to anyone struggling wtan eosinophilic disorder. They are a true blessing.

Client Served

Rating: 5

APFED has helped me deal with my EoE in multiple ways, both as a resource for information on the disease and also as a community. I attended the patient conference this year and it was an amazing experience that gave me a network for support, which is something I haven't had in the 2+ years since my diagnosis. This is by far the most informative website and the support team behind it is incredibly responsive. The EOS connections support page also helps to get questions answered and serves as a reminder that I am not alone in this fight. Thank you APFED!

1

Client Served

Rating: 5

I think that APFED offers a lot to the community. As a patient with EoE I have developed great relationships with other patients with my disorder. I look forward to their conference every year and I have attended the past 10 conferences. It is a great experience and I learn a lot.

2

General Member of the Public

Rating: 5

My nephew has EoE, and has benefited so much from Apfed. He attends the annual conference (I have, too!) and values the time he is able to spend with other kids that have similar disorders. I have learned so much through their education at the conferences, newsletters and their staff is wonderful. My experience with this nonprofit has exceeded all my expectations, and I will continue to support their efforts!

Volunteer

Rating: 5

When my son was diagnosed with Eosinophilic Esophagitis, I had no idea what resources were available. I needed support and a better understanding about how to manage the disease. What I found from APFED was more than just information but a genuine community, online resources, and advocacy tools. From the APFED.ORG website, I readily gathered templates, additional information, and a place to connect with other families living with eosinophilic diseases. What a gold mine!

Donor

Rating: 5

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!

Jamie83

Donor

Rating: 5

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!!

Kate96

General Member of the Public

Rating: 4

Love apfed.org. I have learned so much about my daughter's diagnosis of Eosinophilic Esophagus and Colitis. This website helped me to write a 504 plan for her; she is a junior in high school. Everything in the 504 plan was accepted by the school. I have also been able to educate the school, friends, and family because of apfed.org.

My 15 year old daughter started having stomach pains in October of 2014. As the month went on, they pains got worse and more often. I would have to take her home from school. We took her to our general practitioner and he scheduled her for an ultrasound and blood work, thinking she had endometriosis. Every thing came back negative. Finally, after two months, we took her to the emergency room where a CT scan and another ultrasound were performed. The only finding was being constipated. She also started vomiting every time she ate. She did a clean out; didn't help. Took her to an OB/GYN and a GI. They both recommended another clean out. Still didn't help and her esophagus started closing off when she ate certain foods, potatoes and strawberries. The GI finally consented to doing an endoscopy and colonoscopy. She was on a ppi at the time. The biopsy came back with 50+ eos in her esophagus and colon; hence, the diagnosis. This was in January 2015. Since then she has gone to the point of not being able to eat anything. She just vomits it. Even if she doesn't eat, she vomits her spit and bile. She has tried an NG tube and an NJ tube for feeding and they have not worked. She was diagnosed with motility problems and gastroparesis the first part of June 2015. She was also passing out or nearly passing out. She was diagnosed with POTS and dysautonomia,

2

General Member of the Public

Rating: 5

APFED is a fantastic resource! It has helped me tremendously, from learning about just what eosinophilic esophagitis (EoE) is, to advocacy resources (such as information about 504s for school). It's helped me help my daughter learn about EoE as it is a confusing disorder and is confusing to try to explain to a small child. I'd be lost without this resource!

2 Juliet R.

Client Served

Rating: 5

APFED is an amazing resource! I don't know how we would manage my son's care without the information base, resources, and community APFED provides. My son looks forward to the annual conference all year--he makes "EoE friends" and I learn about advancements in research that inform our treatment plan. I have raised $35k for APFED because they drive innovative research. We hope for a cure!

1

Volunteer

Rating: 5

Five years ago, our son’s gastroenterologist finally assigned a diagnosis – and provided us with little in the way of an explanation or outlook. Looking for additional information, we discovered APFED, which provided a wealth of resources and helped us find others who were on the same journey. Today, as a volunteer with APFED, I continue to be awed by the breadth of effort put forth by its committed staff and volunteers. This is an organization that works diligently – and strategically - to serve its patient community at the national, state, and local level, serving as “voice of the patient” in helping shape policy and promote rare disease research funding; provides grants to foster new avenues of research; offers guidance/support, education tools, and platforms to help patients/caregivers connect…and more. We are very appreciative of the work APFED is doing to advance research and improve the lives of those living with an eosinophil-associated disease.

2

Client Served

Rating: 5

Over 10 years ago my son was diagnosed with EoE. Over the years APFED has been a great support and comfort for our family. The staff and volunteers at APFED go beyond their job to ensure that families have the knowledge needed to make informed decisions about Eosinophilic Disorders.

1 cfmartin

Donor

Rating: 5

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!

1

Volunteer

Rating: 5

I am Grandma and a volunteer...not enough wonderful words to say about how fantastic they are!