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EosMom1

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What I want to do

Make positive changes in the world.

What matters to me

Honesty, kindness, compassion.

What inspires me

The kindness of others.

NJ

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APFED
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

MY ROLE:
General Member of the Public & SAHM.