img82From APFED founder, Beth Mays: “There 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

APFED formed by Jacque Fanning, Sherri Herrick, and Elizabeth Mays. Application for nonprofit status completed.
1st annual patient conference was held
Website launched
1st APFED newsletter published
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
Expansion of formal education programs
APFED HOPE research grant program started
Sponsored the development of FIGERS, now known as TIGERS
Led efforts for Congress to declare third week in May as National Eosinophil Awareness Week
Wrote and initiated implementation of ICD9cm codes for EGIDs
1st HOPE Junior Faculty Award research grant awarded to Dr. Seema Aceves
DocFinder launched on website
APFED secured Congressional report language to form NIH working group for EADs
NORD awards APFED the Abbey S Myers Award
EoE consensus summary written and distributed
NIH TREAD document published with APFED president as coauthor
APFED receives 5-star rating from GuideStar
APFED given “Top Rated Nonprofit” seal from GREAT Nonprofits
GuideStar Exchange Seal
First Hope APFED/ARTrust™ Pilot Grant Awarded
Eosinophil.Connect Patient Registry launches
NIH released funding opportunity for EAD research
CEGIR forms
Researchers calculated annual health-related EoE costs ~$1 billion; work utilized ICD Codes established for EGID (See 2008)
House of Representatives passed legislation for medical foods coverage for TRICARE
Co-authored “Revisiting the NIH Taskforce on the Research Needs of Eosinophil-Associated Diseases”
Hosted Hypereosinophilic Syndromes Patient Education and Drug Development Conference
Hosted workgroup to identify challenges and needs relevant to transition of care from pediatric to adult EGID health services.
Co-led efforts with IES to establish ICD codes for more subsets of EAD
Co-hosted patient-focused drug development meeting for pediatric asthma, including eosinophilic asthma
Launched podcast and webinar series
Inaugural World Eosinophilic Diseases Day established (May 18)
Eosinophil Disease Patient Charter is published
1st indicated therapy for EoE in U.S. is approved! (Dupliumab/Dupixent(R))
EoE awareness campaign in Times Square, NYC
70 landmarks light in the U.S. for awareness week
Life with EoE report published
Global Emotional Journey for EoE Patients is published