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!
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.
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!!
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.
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.
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.
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!
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 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 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.
When my son was diagnosed with EoE almost four years ago, I quickly recognized my need for a supportive community familiar with the needs if families dealing with EGIDs. I contacted APFED, and they provided me with a gray level if personal support. With the assistance of APFED I was able to start a local support group, the Atlanta/N. GA Eosinophilic Disorders Support Group (GAEOS). Thanks to APFED's support and networking GAEOS has been able to help dozens of families. Thank goodness for APFED.
Last summer my then 2 year old son was diagnosed with Eosinophilic Esophagitis. I will never forget that day, ever. When the doctor came to speak to us while our son was in recovery and I remember her saying, "Good news, your son's colon looks great, no evidence of Celiac Disease. However your son has Eosinophilic Esophagitis." I asked her to repeat it, because she said it so quickly and nonchalantly. I still didn't understand her after the second time, so I asked her to spell it on a hosptial paper that I had in my hand. We had two weeks to stew with this new information, google it and research it, freak out over it before a follow up with the GI. Amazingly and sadly a childhood friend of my husband, her son had been diagnosed 6 months prior. The first thing she said to me when we talked was to stop googling and go straight to the APFED.org website. She said it was the only website she would refer to and what her son's doctor would refer to for accurate information. This made a world of difference. Then about 7 months went by, my son had another endoscopy. My son's eosinophil count came down, but not enough, so we started the elimination diet per the doctor. This is when things got even more tough for me and no one around me (sometimes even my loving, dear husband) couldn't understand my son's needs. I was poking around the APFED.org website and stumbled upon the local support group section. I decided that I needed reinforcements and called the contact person for my local group. It's been the best decision ever. These parents have been so welcoming. We even had our 2nd annual EOS walk. My son alone raised over $500 dollars that all went to APFED.org for their mission of Education, Awareness and Research of Eosinophil associated disorders. I can't stress enough how valuable this group has been and we intend to save up and go to next year's 10th Annual APFED conference!! Everyone and anyone that will listen, the first thing I do is tell them how crucial APFED.org information has been and continues to be for my family, other families and the medical community affected by and dealing with these debilitating eosinophilic disorders.
My 5 year old son has an eosinophilic disorder, is currently off all food, and gets all of his nourishment through a feeding tube. Shortly after his diagnosis, I attended the APFED conference in Cincinnati. I learned a tremendous amount that has helped me care for him and make more informed decisions about his medical care. The community of support that APFED has brought our family and the education we have gained is invaluable. We are looking forward to this year's conference in Denver!
Review from Guidestar