1 person found this review helpful
APFED
January 10, 2012
1 person found this review helpful
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.
More feedback...
How does this organization compare with others in the same sector?
Very Well
How much of an impact do you think this organization has?
Life-changing
Will you recommend this organization to others?
Definitely
When was your last experience with this nonprofit?
2012
December 28, 2011
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.
More feedback...
Will you volunteer or donate to this organization?
Definitely
How much of an impact do you think this organization has?
A lot
When was your last experience with this nonprofit?
2011
1 person found this review helpful
June 30, 2011
1 person found this review helpful
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.
My best,
John (Aidan's daddy)
The Great!
I've personally experienced the results of this organization in...
I've noticed how hard APFED's folks work to bring awareness and support to our rapidly growing EGID community.
Ways to make it better...
If I had to make changes to this organization, I would...
i would grow this organization.
June 30, 2011
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!
The Great!
I've personally experienced the results of this organization in...
having a place to go when our son was first diagnosed. We gained valuable information from their website. Their website really explained in detail what our doctors did not.
Ways to make it better...
If I had to make changes to this organization, I would...
Honestly, I think nothing because Apfed is doing a GREAT job!
June 28, 2011
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.
The Great!
I've personally experienced the results of this organization in...
My family volunteers yearly to assist with the patient education conference
Ways to make it better...
If I had to make changes to this organization, I would...
This organization is doing a extraordinary job.
June 28, 2011
My son was diagnosed with Eosinophilic Esophagitis 2 1/2 years ago. APFED has been a very valuable resource for us. The annual conference is great in that it provides my son an ability to spend time with other teens who have EoE. He now looks forward to this every year.
The Great!
I've personally experienced the results of this organization in...
meeting other families who are affected by EGIDs.
Ways to make it better...
If I had to make changes to this organization, I would...
ask them to donate more money to research.
June 28, 2011
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.
The Great!
I've personally experienced the results of this organization in...
My family's life and the lives of the members of GAEOS.
Ways to make it better...
If I had to make changes to this organization, I would...
Maybe a few website changes for easier navigation.
2 people found this review helpful
June 26, 2011
2 people found this review helpful
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.
The Great!
I've personally experienced the results of this organization in...
helping me answer important questions and have someone to speak to that understands our situation and has been thru what we are dealing with.
Ways to make it better...
If I had to make changes to this organization, I would...
Allow me to start a NY Chapter
1 person found this review helpful
June 24, 2011
1 person found this review helpful
My son was diagnosed with eosinophilic esophagitis when he was 3. It was a long road to finally receive his diagnosis and treatment. APFED has become a staple in my life. I received more information on this site than from my son's physicians. My family and I will be attending our 1st APFED conference this summer and we can't wait.
The Great!
I've personally experienced the results of this organization in...
As research continues, my son will always personally gain from this organization. Without APFED, I'm not sure others would really understand these disorders.
Ways to make it better...
If I had to make changes to this organization, I would...
None. It has provided me with all the information I have needed.
June 21, 2011
Apfed has been invaluable in helping us deal with our daughter's chronic disease. Their website alone is a tremendous source of information, covering topics from research, to education, to advocacy.
The Great!
I've personally experienced the results of this organization in...
Apfed helped us find other families with children with this disease, and specialists that know how to treat it.
Ways to make it better...
If I had to make changes to this organization, I would...
help raise more money for research!
More feedback...
How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
How did you find this group?
internet searching
What, if any, change in your life has this group encouraged?
It helped us find doctors that were knowledgeable in this disease, which greatly increased my daughter's quality of living!
When was your last experience with this nonprofit?
2011
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