History

img82There is a founding principle within APFED: “We Get It!” And we do. My son has eosinophilic gastroenteritis (EGE). Back in 2000, we struggled with a sick 1 year old incapable of telling us what was wrong. Charlie saw doctor after doctor and underwent test after test with no apparent reason for his vomiting, pain, and screaming fits. He spiraled downhill until he wound up in the hospital on total parenteral nutrition (TPN, or intravenous nutrition) at 16 months old, still without a diagnosis. Six months later, the strange word eosinophilic was mentioned to us. Finally – a diagnosis to go on and a place to begin.

I was told not to look up EGE because I would get nothing but misinformation from the “unreliable” Internet. I found myself surrounded by a group of mothers just like me. Sadly, our stories were all the same. Sadder still, our numbers were increasing rapidly. I began to read medical journal articles and armed myself with a medical dictionary and no fear of asking my physicians questions to gain better understanding of this poorly understood disease. APFED was born out of necessity.

Timeline of APFED’s Key Milestones

2001 APFED formed by Jacque Fanning, Sherri Herrick, and Elizabeth Mays. Application for nonprofit status completed.
2002 1st annual patient conference was held
2002 Website launched
2002 1st APFED newsletter published
2003

APFED was accepted as the first patient advocacy group to be an expansion of the AAAAI lay organizations committee, from the original five patient advocacy organizations

2005 Expansion of formal education programs
2006 APFED HOPE research grant program started
2006 Sponsored the development of FIGERS, now known as TIGERS
2007 Led efforts for Congress to declare third week in May as National Eosinophil Awareness Week
2008 Wrote and initiated implementation of ICD9cm codes for EGIDs
2008 1st HOPE Junior Faculty Award research grant awarded to Dr. Seema Aceves
2009 DocFinder launched on website
2011 APFED secured Congressional report language to form NIH working group for EADs
2011 NORD awards APFED the Abbey S Myers Award
2011 EoE consensus summary written and distributed
2012 NIH TREAD document published with APFED president as coauthor
2012 APFED receives 5-star rating from GuideStar

2010-2014

APFED given “Top Rated Nonprofit” seal from GREAT Nonprofits
2010-2014 GuideStar Exchange Seal
2013 First Hope APFED/ARTrust™ Pilot Grant Awarded
2013 Eosinophil.Connect Patient Registry launches