We love Julie Forrest and Apfed.
3 years ago our son, Adam, died suddenly of a massive heart attack. He was only 32.
The autopsy showed that he had atherosclerosis. He had the heart of an 80 year old.
Adam was diagnosed with eosinophilic fasciitis when he was 23. At that time no one really knew anything about eosinophilic fasciitis. We believe that this disease, along with the harsh drugs that were used to treat it, contributed to his heart disease.
Adam died June 1, 2016.
Through our grief and need to understand Adam's death, our older son, Adam's big brother, Ethan, began to search for a way to honor Adam and also give us hope for the future that we could have better understanding and treatments for EOD. Ethan searched the internet and found Apfed and Julie. Just what he was searching for.
Ethan and Julie worked together and within a year set up our first Adam Rantz Memorial Golf Outing. Our mission is to bring awareness to Eosinophilic Disorders and help to raise funds for research to understand and treat EOD.
The event was a big success , thanks to Ethan and Julie.
Apfed has a great website that makes it easy for our family and friends to get information and sign up and contribute to our event. Julie is very organized and able to help with any problems. The day of the event she is right with us for support and also a calming factor. Thanks to Apfed and Julie and Ethan, we have had 3 outings and are looking forward to our next one, May 15, 2020.
We our thankful to have Apfed and Julie helping us honor our son Adam while we raise money for such a good cause.
Mike and Robin Rantz
I've become acquainted with APFED through a lifelong friend whose son has EOE. I've been so impressed by the support APFED offers to those affected by eosinophil-associated disorders. My friend's son's life has been so positively affected by meeting other kids with EOE at the annual conference and he's developed important friendships with kids of a wide range of ages. My friend has also benefited from the community APFED fosters among parents. I've contributed to a number of fundraisers for APFED and have been impressed by the promise and results of the research APFED funds; in the years since my friend's son was diagnosed, APFED has funded research resulting in new treatment options.
APFED is a thoughtful organization of dedicated individuals that is vital to the lives of those living with eosinophil-associated disorders. By joining families and scientists in a unique community, APFED provides unmatched resources in the way of patient and family support, education of the public, advocacy, and funding essential scientific research towards a cure for conditions we have yet to fully understand, but must strive to understand. I have felt their direct impact as the friend of a child with EoE, and as a physician. I am thrilled to be able to support APFED and their mission.
I am SO proud of all that APFED has accomplished and continues to do. Our website is a leading source of up to date research and important information for patient community and physicians alike. And the Board, staff, and volunteers truly care about each of our families.
APFED’s mission is to embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases. It accomplishes this by focusing on advocacy, research, support of families, and education and awareness.
My son was diagnosed with EoE in 1994, long before this patient advocacy group was created to help deal with this disease. I have volunteered for APFED for many years and joined the board recently in part to thank this organization for all of the work they do to help families like mine deal with this rare condition.
I hope that every family that is dealing with one of these eosinophil-associated diseases will find APFED and take advantage of all of the resources they have to offer, including the annual conference. Even though my son had already been living with EoE for many years when I attended my first EOS Connection conference, it and APFED changed our lives.
I have relationships with a number of voluntary health organizations, but have not experienced benefit like what my family has received from APFED. The community of families built at and around the annual EoE conference is amazing. The information APFED brings to families (like that of my nephew, who suffers from EoE) is incredibly clear and helpful. And there's all too little research underway toward treatment and cure of EoE, so everything APFED does to finance and influence and research makes a tremendous difference.
APFED is a FABULOUS charity. My son was diagnosed with eosinophilia gastritis recently and I didn’t know where to turn. I discovered APFED and was so thankful. They are a wealth of valuable information. In addition, I loved seeing that APFED uses funds from donations to offer grants to reputable hospitals all over the country to conduct research. There is currently no cure for Eosinophilic gastritis , but with APFED’s hard work, hopefully one will be discovered through their funded research. This is one charity that I will continue to donate to. They are transparent and have great ratings!
From the time our grandson was born until he was about two he was labeled ‘failure to thrive.’ He hardly ate and hardly grew. Then he was diagnosed with Eosinophilic Esophagitis. Not fun, of course, but at least we were starting to learn about his condition, symptoms and causes. Then his parents learned about Apfed and began to feel some hope, which our whole family shared. Since then–six years later–Apfed has been a continuing source of information and support, for which we are all grateful–especially Jack.
APFED provides support to the community affected by eosinophil-associated disorders through its annual conference. My nephew with EoE has told me about going to the conference and how important it is for him to meet other kids like himself. It's one of the highlights of his year and has been instrumental to our whole family as we feel part of a broader community.
This organization has helped me so much. From learning how to work with her school and getting a 504 to how to tell family members! Amazing organization and I love the conferences!
APFED has been with my family from very early in our journey with Eosinophilic Esophagitis (EoE). The organization provides community and educational materials to families like ours, who are lost and alone at the time of diagnosis. Without APFED advocating on our behalf with government agencies, legislators, hospitals, and pharmaceutical companies, it would even more difficult to manage EoE. We need the outcomes of research that APFED funds; we depend on the legislation mandating coverage of our medical supplies; we lean on our community every day. I'm thrilled to have joined the board of directors so I can contribute to this work.
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!
The integrity and persistence of this organization as they represent families like mine in their advocacy efforts is unparalleled within our community! I also appreciate their collaboration with professional organizations to pave the way in funding research through their grant program and furthering education within the medical and patient communities.
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.
APFED is an amazing resource and timeless repository of information! The website is full of great information to help my family.
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!
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!!!
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!!!
A charity with HEART that puts patients FIRST! So grateful our family has this organization to turn to for support and information.
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!
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.
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!
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.
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!
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!
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!
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!!
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,
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!
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.
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.
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!
I am Grandma and a volunteer...not enough wonderful words to say about how fantastic they are!
I have been volunteering for APFED for years. The professionalism and organization of the staff and other volunteers has always impressed me. But what is most impressive is their passion and dedication to this wonderful cause!
i became aware of APFED after my daughter was diagnosed with an EGID. I am so grateful for all that APFED does for patients and their families. The annual patient conferences, educational pamphlets, website, legislation and research involvement is extremely valuable. If it were not for APFED I know I would not be the advocate for my daughter the way she needs and deserves to be advocated for. This is due in large part due to the information that I have received from APFED. I am able to communicate to my daughters physicians, teachers, and others in my community about eosinophilic disorders based off of the education I receive and continue to receive from APFED.
When our daughter was diagnosed with an eosinophilic disorder three years ago, we felt we had no where to turn for information. We had never heard of the disorder and knew no one else with it. At a routine doctor appointment the physician mentioned that an annual patient conference given by Apfed would be held in our state in the following few months. We attended the conference and learned more in those few days about the disorder than we had in the 6 months since our daughters diagnosis. Apfed provides education, support and promotes awareness of a disorder that can deeply affect a patients life.
I am grateful for Apfed and the help they offer patients and their families.
I am a mom of a child with EoE. APFED has blessed our family with the wealth of information it provides to families that travel this path. The resources that it offers families is priceless. It provides detailed information to help guide families with coping skills, to preparing your child for school, to celebrations and even recipes for restrictive diets. APFED holds annual conferences to educate, create awareness and to make a difference in the lives of so many people. APFED changed our life through one of its conferences. We were a family struggling with a new diagnosis and found much needed support to help guide our family. It's been 10 years since our first conference as a family and APFED continues to amaze us!
APFED is an amazing organization that advocates for patients and families. When our son was an infant he was very sick. He was borderline malnourished and we couldn't figure out the cause of him being so sick. After numerous tests, scans and steroids our son had no change in his condition. At the age of 2 he was misdianosed with acid reflux. Our son was diagnosed correctly with EE at the age of 3 and then was removed from all foods at age 4. This was a drastic change in his life and ours. How do you tell a 4 year old that there is no more food in his world? Our family was gieven this information and then given the name of APFED as an organization that may be of help to us. The first day back from Cincinnati Children's Hospital I called the number to APFED and spoke to the president. She was encouraging and helpful and put me in contact with other families who were struggling down this same path. Through numerous conversations and encouraging words our family was guided down the path of adapting to a foodless world. When I expressed a willingness to coordinate a grand rounds, I was provided with everything that I needed to follow through with that objective by APFED. We were impressed by the dedication of APFED to families, to education, to initiatives and to research that we decided to hold a fundraiser for APFED. We had never taken on such a task before but we were driven on behalf of our son and on behalf of an organization that was instrumental in saving our family unity. We decided to hold a golf tournament and donate all of the proceeds to APFED. Wow! What an inspiring thing we did together as a family. Working together on this project helped to mend our broken and hurting hearts knowing that we were contributing and giving back to an organization that helped us more than words can say. We are now in our 6th year of holding a fundraiser and have raised over $80,000 for APFED. We are paying it forward and will continue to do so. APFED has made huge strides on behalf of patients and families and the least we could do is give back. APFED will always have a special place in our hearts for giving us the HOPE to keep on. Thank you APFED!!
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.
APFED is an information-rich resource for families who are wrestling with an EGID. They work tirelessly to provide cutting-edge information, as well as to organize the disease community around educational and fund-raising opportunities. Their conferences are a tremendous opportunity to exchange ideas and meet new people who are living with the disorders. APFED's leaders also do a tremendous amount of advocacy to help ensure that patients get the medical care that they need. We are so grateful to have found APFED and to have opportunities to volunteer for this excellent nonprofit.
APFED has been a blessing to our family, as we deal with EoE with our three children. The conferences are a great resource to meet with other families and doctors and understand the disease and treatments from a variety of sources. Lately, APFED was critical in providing and sharing information related to Legislative activities in other states to allow us to successfully pass similar legislations in Nebraska. Without this critical resource, we wouldn't have been able to advance critical assistance to assist in the care of children. APFED is very responsive with information requests through e-mail and other social media venues, maximizing communications.
I am a volunteer who raises money for apfed. but MOST important I am a mother of a child with EGID. these apfed support groups help everyday by giving muh needed support and guidance through this rare condition
When Emily was first diagnosed at 10 months old, doctors recommended taking her off all food and beginning drinking elemental formula exclusively. We didn’t really know how to cope and daily functioning was difficult for not only us as parents, but understanding how to support our daughter. When we were connected with APFED we finally were able to understand and be educated on what was happening and allowed us to take each step with knowledge about what was happening.
A month after learning about APFED, a staff member connected us to a local support group and finally we felt hope again. I felt like I could breath again and cope with our new adjusted life. APFED has an amazing group of professionals and volunteers that are dedicated and personally want to support and better the community through education.
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.
A friend referred me to APFED's website after my daughter was diagnosed with Eosinophilic Esophagitis three years ago. I was completely overwhelmed at the time of her diagnosis. APFED quickly became an organization I hold dear to my heart. Their dedication to supporting families and creating awareness truly goes above and beyond.
Their volunteers inspired me to want to help. With their guidance, I started a support group for local families dealing with eosinophilic disorders. In addition, they assisted me with hosting a walk to benefit APFED's Hope on the Horizon Research Fund. The help I received to make the walk a success was truly amazing. It felt great to give back to an organization that gives so much to others.
When my grandson was diagnosed with an Eosinophilic Disorder in December 2012 an internet search led us to APFED.org. American Partnership for Eosinophilic Disorders has since been been a tremendous help to my daughter. The information listed on their website helped us understand more about this rare condition. It helped her communicate questions, concerns, suggestions to her son's various physicians. It also gave my daughter a place to connect with other families dealing with this disorder. That alone is extremely valuable. Both my daughter and myself found a "purpose" in volunteering to help American Partnership for Eosinophilic Disorders. My daughter lives in a rural area and has enjoyed doing editing work for APFED. I just completed a thirty day endurance event to create awareness of Eosinophilic Disorders. In appreciation for our efforts APFED help defray travel expenses so that my daughter and grandson could be a part of APFED's Day on Capitol Hill during National Eosinophilic Awareness Week. My daughter and grandson were able to speak with several members of Congress to bring awareness of this disorder and to lobby for research funding.
My 9 year old son was diagnosed with an eosinophil associated disease in December 2012. The only advice his GI gave us was to visit apfed.org. Their website led me to online community of other parents of children with eos diseases and I quickly made many "friends" who could relate to what we are going through and offer real-life experiences and advice. Apfed's website also offered a wealth of literature on various topics involving eosinophil associated diseases. I began volunteering for Apfed (a few hours a week from home) a couple of months ago and this has led to even more amazing connections around the country. My son & I were recently invited to participate in Apfed's lobbying day on Capitol Hill! The initial diagnosis is heartbreaking and stressful and Apfed literally saved me. The people I have met through this organization have truly saved my son's quality of life. I honestly don't know where I'd be without their knowledge and support.
APFED is a wonderful and highly recognized nonprofit organization that has benefited my family for years. When my three children were newly diagnosed with Eosinophilic diseases we couldn't pronounce the name much less understand what the condition meant. I found an APFED flyer at our pediatric gastroenterologist's office that led me to their website. Once I got online and took a look around, I was encouraged to get involved with APFED. My main reason was because I felt like APFED knew how important awareness of Eosinophilic Gastroentestinal Disorders is to me and my family. Research for a cure is huge as well, but if people aren't aware of Eosinophilic diseases then they are less likely to donate to help find a cure. Another thing that I love about APFED is their desire to educate both families and medical professionals.
I am a clinical dietitian for an allergist in Charlotte, NC. The APFED website has served as a phenomenal resource for my patients before and after their initial visits. I have been over the moon pleased with the simplicity of the presentation of such a complex disease. I also have to thank APFED for their assistance in promoting community awareness. With their help, I started a local support group.
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.
The people at APFED work tirelessly to bring much needed attention to a rare disease. They provide support for those who are affected by this disease, EGID. Many families have been helped by the volunteers at APFED.
APFED has been an exceptional resource - both from the point of view as a parent with a son with an EGID and later an advocate for insurace coverage change. APFED's annual conferences are very informative and help to keep us up to date on current research in the field. In addition their volunteers are extremely helpful through all stages of dealing with EGIDs. Thank you!
My patients have repeatedly praised the help and guidance they receive from Apfed.
During my lifetime, I have worked with, supported and benefited from numerous non-profit organizations. Few, if any, have taken patient advocacy and disease awareness to the level APFED has done. APFED has addressed the needs of patients, clinicians and researchers. They work on a local, national and even international level to advance the understanding of eosinophilic disorders. This past summer I attended the annual conference and was able to feel the direct impact the organization has on so many patients lives.
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.
APFED is an invaluable resource to those of us who are affected by an EOS disorder. Whether you are the one affected, or have a family member who is, there is a wealth of information available on APFED's website. I have used it to help find the right doctors for my son, support from their chat rooms, and for looking up symptoms to see if what my son is going through is normal for an EOS kid. I have also done various fundraising events for APFED, I believe in it that much. Together, we can find a cure!!!!
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!
APFED is great cause it helps families learn so much about the disease. If it were not for APFED and the amazing workers me and my family would be so lost on the disease. It has been the biggest help ever for me and my family. I thank GOD for those amazing people that offer to help us and our amazing families. They also have so much intersting and research stuff.
APFED is wonderfully supportive and proactive organization for those of us who have unsuspectfully found ourselves belonging to the eosinophilic family. I met my first eo mom friend on the chat board - meaning the first person I could talk to that 'got' what I was saying and was going through with my son. That was five years ago and I've since met other families that have become friends as well. This year, I started to volunteer for APFED because I'm thankful for their continuing goal to keep us up-to-date on current information, for their campaigning on behalf of eosinophilic disorders, for their conferences, for their fundraising for much needed research, for being there in whatever capacity each of us may need. I wanted to be a part of it and help contribute. The staff members I have met are so dedicated and I am in awe of their dedication and generosity of the hours and hours they volunteer to APFED all in the name of helping even just one more patient. Thank you, APFED :)
My son was suffering terribly with a mysterious malady that no doctor seemed to be able to nail down. We were misdiagnosed 7 times by as many different specialists. Every time we saw a new doctor, my son would get a different title, and a different therapy. Nothing ever worked. I was desperate to help him feel better, and spent a good bit of time online, researching as much as I could from the little I knew. I eventually found the APFED website, and a detailed description of what my son's major symptoms were. Over time, I would continually come back to the APFED site to confirm my suspicions. I even made contact with someone in the disease community, who helped me tremendously by phone and email. They turned out to be a representative of APFED! My son has since been diagnosed with the condition I suspected, and APFED has continued to be a huge resource for us as we navigate the course of his disease and treatment.
I was diagnosed with Eosinophilic Gastroenteropathy when I was 12. 8 years later, APFED is still my go to resource. When I was first diagnosed, my mom and I spent a lot of time going through the information and resources on the APFED web page. It has always been well written and extensive, offering information for the most basic cases and new patients to those with more complex issues. As years have passed, they have updated their information and various resources as new information and experiences have developed, including tips on how to get formula covered by insurance and a specific page for kids with age appropriate material and explanations. I keep up to date on their legislative efforts as well, and the work they do is truly remarkable. I have also had the pleasure to attend the last two Eos Connection Patient Conferences. They are fantastic, full of information and support. I plan on attending every one that I possibly can. The last conference, I was also able to contribute as a volunteer. The primary people involved were fantastic to work with and they treated all their volunteers very well. I am so thankful that APFED exists and for all that it does for people with Eosinophilic Disorders.
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!
My son was diagnosed with Eosinophilic Esophagitis when he was 11 months old. My husband and I started doing internet research and found APFED. We have had board members and volunteers contact us to see if they could offer any assistance. They have helped us find Doctors who are knowledgeable about the disease, helped us get insurance to cover the medical food our son needs to thrive and grow, and also introduced us to different support groups. It's not easy to have a chronically sick child but having support through an organization like APFED has made it a little easier.
After my son was diagnosed with Eosinophilic Esophagitis APFED was an amazing resource that helped my husband and I learn far more about the disease and how to manage it in our every day lives. APFED is a great organization for anyone living with EGIDs!
My son was diagnosed with eosinophilic esophagitis over three years age. EoE is a rare disease and I did not know anyone with the disease. I felt very alone in caring for my son. I went to APFED's patient education conference in 2011 and met so many people dealing with the same issues that we were facing. APFED is committed to raising awareness, advocacy, and research. I have volunteered to help in APFED's legislative efforts to raise awareness and obtain funding for research. APFED is growing. I think APFED is taking steps to meet the challenges that growth presents and has a strong vision for the future.
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.
Apfed's work made it so children like mine can receive insurance coverage for the very important elemental formula they need to survive.
Without APFED we'd have no real voice. Thank you APFED.
John (Aidan's daddy)
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!
As a mother of a child with EoE I know first hand the need for support and education, not only for my family but everyone we meet. Apfed was there when I most needed to learn more about this disease and encouragement to move forward. The many volunteers that donated time to make sure that I had the necessary resources to be the best advocate for my child was priceless. As a board member I am so very impressed with all the families that I meet that come together to advance the knowledge of this disease and know that dealing with this condition requires support on many levels. Apfed truly lives up to their mission and vision and continues to challenge the community to unite to advance the future knowledge of this disease with the outcome of providing a better quality of life for the families living with this disease.