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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

20 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.

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

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!

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!

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!

General Member of the Public

Rating: 5

I am a mother of three children with EoE and also manage this disease as well. APFED is an incredible resource patients and doctors alike. I have attended two conferences and gathered valuable information concerning eosinophilic disease. APFED provided excellent and timely information to my husband and I as we were pushing for elemental formula coverage legislation in our state this past year, and it was critical in our efforts and communications with state legislators.

Kristen24

General Member of the Public

Rating: 5

This organization has been a life saver to say the least! I was at a complete loss until I discovered such a welcoming and helpful organization. Not only have questions been answered, but lifetime friendships have been formed. This organization is filled with real people who live the same lifestyle... They "get it" and been through it. I'm not good with words, wish I could better describe how amazing everyone is, how helpful, how life changing this organization truly is. I'm so very thankful to know I'm not alone in this... To know there are others living the same and willing to help as much as they can, even going out of their own way to help. I have never known an organization so passionate about helping others and making others know and feel that they are not alone in their journey. To add to their wonderful warmth, they also provide medical updates and helpful education for not only families, but for others to understand our lifestyle. APFED is amazing and we would be lost without all those behind the name of the organization. Thank you APFED for being a part of my family.

Rhonda B.

General Member of the Public

Rating: 5

My son was diagnosed with Eosinophilic Esophagitis (and suspected lower EGIDs) when he was 10 months old. I had never even HEARD of Eosinophilic diseases.

So, naturally, the first thing you do when a new diagnosis is thrown at you.... I started googling this strange new disease. Medical sites had some information, but I still felt like I was in a very grey area between mass confusion and total clarity.

I came across the APFED site and immediately it became my go-to for information. The information on the page was what made me realize that our specialist at the time was not well versed in the disease and that we needed to find better help for my son. It also helped me to find my son's current team.
If I EVER have a question about my son's disease, I head on over to the APFED wesbite. They are full of up to date and accurate information, and I greatly appreciate the effort and time that goes into this site. I don't know where we would be without it.

Jillian O.

General Member of the Public

Rating: 5

My adorable nephew has been diagnosed with EOE and APFED has been a great resource for his mother as well as the rest of our family. What they are doing to help find a cure is amazing. Hopefully soon there will be a cure for all of the amazing people out there that have been diagnosed.

Sharlon O.

General Member of the Public

Rating: 5

I know at least 3 families who have personally benefitted from APFED. The job they do in making the public aware of Eosinophilic Disorders is second to none. They provide support for the families dealing with this disease. And all of this is done by volunteers! Absolutely amazing!

EosMom1

General Member of the Public

Rating: 5

My son was diagnosed with Eosinophilic Esophagitis in 2004, which is when I discovered APFED and the support, education and advocacy that they were able to provide. They, along with our wonderful medical professionals at CHOP and the strong online support community, made an otherwise horrific diagnosis manageable. I went from walking around with the "deer-in-the-headlights" look, not knowing what to do or where to start, to being able to manage my son's disease and keep him healthy.

I thank the amazing volunteers at APFED for helping us get to this point, especially the founder, Beth Mays, who, along with the other volunteers, would spend countless hours supporting anyone who needed it, and fought extremely hard to get the medical community to realize that this was not a laughable disease, and it affected more people than they once realized. Knowing where we were, and how little information was available when we first started out, and knowing how much is available now, thanks to the hard work of the APFED volunteers, I look back in amazement at how much they have accomplished. Never minimize the importance of education and advocacy, as they are just as necessary as research, all of which are APFED's goals.

Some of APFED’s accomplishments include:
Organizing of annual patient education conferences on Eosinophilic Disorders in different locations every summer, which feature seminars given by the foremost specialists in the field. These “Eos Connection” conferences also give patients and their families a chance to meet others who are dealing with the disorders. The conferences are very informative and well-attended.

ICD-9 coding – APFED successfully lobbied for the creation of diagnostic codes (ICD-9 coding) specifically for eosinophilic esophagitis, eosinophilic gastroenteritis, and eosinophilic colitis. These codes went into effect on 10/1/08. If utilized by treating physicians, they will allow the people who are diagnosed with these disorders to be properly counted.

“National Eosinophil Awareness Week” - APFED initiated House Resolution 296, which was passed by the House of Representatives on 5/15/07, and is federally recognized as the 3rd week of May, each year.

Funding of numerous research grants through the Hope On The Horizon Research Fund, including research at: Children’s Hospital of Philadelphia (CHOP), University of Pennsylvania School of Medicine, Cincinnati (CCHMC), Children’s Hospital of Denver, University of California San Diego, Feinberg School of Medicine, University of Colorado School of Medicine, Vanderbilt University, Stanford University, and Riley Hospital for Children Indiana University School of Medicine.

APFED provides a voice to our Eosinophilic community by working with physicians at multiple academic centers, with professional societies, government agencies. They hold a seat on the
• American Academy of Allergy, Asthma and Immunology Lay Organizations Committee,
• American College of Allergy, Asthma and Immunology Lay Organizations Committee,
• AAAAI Eosinophilic Gastrointestinal Disorders Task Force.
• They are also an invited participant in the National Institute of Health’s (NIH) Food Allergy Clinical Guideline Coordinating Committee.

APFED supports physician medical education; Develops educational materials for physicians, patients and support groups; Maintains a support phone line; Assists people with finding a physician or a local support group if needed; Provides a message board on their website for member support.

They are also working on standardizing diagnostic criteria, which would help patients be properly diagnosed sooner, and lobbying for mandated formula coverage nationwide.

They have successfully helped to educate and raise awareness within the secondary care community (GI & Allergy), but are beginning to focus on helping to educate the primary care community as well. This may result in earlier diagnoses, thus decreasing the amount of time people have to suffer with insufficiently treated symptoms.

These are only some of the things that the extremely committed APFED volunteers are involved with. If it weren’t for their tireless efforts, the information available to us would be minimal and the number of medical professionals who know anything about EoE or EGID would be very few. Thanks to their hard work and persistence, it is now better known and understood.

General Member of the Public

Rating: 5

When our son was first diagnosed, we were so lost and confused.
When we found Apfed, it taught us so much! Apfed provides the education that parents and older children need. It also promotes awareness in the community. We tell everyone to please donate to Apfed and help us find a cure for our kids! Apfed saved us!

2

General Member of the Public

Rating: 5

My 2 year old son was vomiting for 13 days straight. In the hospital they just kept saying that he had a bad virus. After being admitted and running a battery of test the G.I. doctor told us that my son had eosiniphilic esophagitis. My wife, my in - laws, my parents and myself had no clue what he was talking about. We ran home and started googling things and became even more upset and angry. My 2 year old son would never eat like a normal person and we knew nothing about this disease. Through our googling we came across APFED and quickly started to find some real answers. The foundation has been amazing for us and in turn we had a fund raiser this past March and we donated over $45,000 to the foundation. We are determined to fight this disease and one day I want my son to eat like a little boy or girl that can eat normal foods.

General Member of the Public

Rating: 5

APFED and the information we have gained from the website, other parents, and related activities has been a tremendous help to our family in understanding our son’s diagnosis of Eosinophilic Esophagitis. The information provided to us through this website has been very comforting and served as a resource for other people in our community. The volunteers/employees of APFED are extremely helpful and timely in responding to any questions or information asked of them. My husband recently competed in a triathlon to help raise money for APFED. Julie Springer was extremely helpful in providing needed information and assisted him in anything he asked of her (sending a link for our family blog, posting on APFED website...). Thanks APFED for helping us on our EoE journey.

General Member of the Public

Rating: 5

APFED has been a great resource for my family. Apfed provides updated resources for my son's physicians. They continue to work towards raising awareness in the community and in the medical field. They are also working on furthering research by encouraging new researchers to get involved in researching eosinophilic disorders. Their conferences have been awesome!

12

General Member of the Public

Rating: 5

My name is David, I am 25 years old, and I have suffered with eosinophilic esophagitis my whole life. I can't eat any chicken, fish, tree nuts, or peas, beans, lentils (legumes) or I get terrible chest pains and I can't swallow. Also, in the early fall if I go running or exercise, I may feel sick and have to stop. These things may seem bad, but APFED has taught me that I am actually lucky, compared with others with my disease. I came across their message boards on the kids with food allergies website and soon found some videos on youtube made by the group. I learned about the many kids who have this disease. Some of them can't eat any food and have to have a feeding tube for nourishment. Some of them get sick even without food, if there's something in the air they are allergic to. I had no idea there were so many with the same problem as me. Watching these videos breaks my heart, but it also helps me cope with my own problems, realizing they are not so bad. The alienation I felt telling my friends I couldn't eat chicken throughout my life, is actually small in comparison to what some of these kids go through. I hope APFED will continue to grow so that the rest of the world will see how strong these kids are. I also hope APFED increases worldwide understanding of this disease, so that maybe some doctor out there can come up with some better solutions for these kids. Thank you APFED, keep up the good work!

10

General Member of the Public

Rating: 5

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.

11

General Member of the Public

Rating: 5

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.