All posts by Amity Westcott-Chavez

APFED Featured on Advocacy Podcast

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In a recent episode of Patient Advocacy Voices by Sanofi, APFED Executive Director Mary Jo Strobel joined hosts Eric Racine and Preeya George-Guiser to share how APFED is driving change for those living with eosinophil-associated diseases.

Strobel reflected on her personal journey into advocacy, which began with volunteer work and deepened after a family member’s diagnosis with eosinophilic esophagitis (EoE). She highlighted APFED’s grassroots origins and its evolution into a national organization with a mission to improve lives through education, research, and policy change.

The discussion explored APFED’s approach to turning awareness into action, from national campaigns like World EoE Day to targeted education efforts that support earlier diagnosis and better outcomes. A standout moment included the impact of a Times Square awareness billboard—where a passerby recognized their symptoms in real time.

Strobel emphasized that APFED’s strategy is driven by data and patient input. Initiatives like the Life with EoE report offer a blueprint for meeting real-world needs, while the organization’s policy and provider outreach are grounded in measurable insights.

As Strobel reflected on her leadership approach, she emphasized a guiding principle that shapes APFED’s work: “Keep the patient front and center of everything.” Whether it is awareness, policy, or research, every decision, she said, must come back to what best serves the community.

Listen to the Full Episode
“Building Awareness, Driving Change: Inside APFED’s Strategy for Rare Disease Advocacy”
Available now on:  Patient Advocacy Voices, Apple Podcasts, Spotify, and More

APFED’s Annual Patient Education Conference Returns June 26–28

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Eos Connection 2025 Offers In-Person and Virtual Access to Education, Support, and Community

Raleigh-Durham, NC – The American Partnership for Eosinophilic Disorders (APFED) is proud to announce Eos Connection 2025, its flagship patient education conference, is taking place June 26–28, 2025, in Raleigh-Durham, NC, and virtually.

The three-day event will unite patients, caregivers, healthcare professionals, and researchers to share the latest insights on eosinophil-associated diseases. Attendees will benefit from expert-led presentations, patient and caregiver panels, and opportunities to connect and engage with the broader community.

The conference will feature a dedicated teen program and family-friendly activities to create a welcoming environment for all ages. Brady Allen, quarterback for the University of Louisville Cardinals football team, will be onsite for a special meet-and-greet and will spend time with kids, sharing his personal experiences with eosinophilic gastrointestinal disease.

“Eos Connection is more than a conference—it’s a space where families come together to learn, connect, and feel empowered,” said Mary Jo Strobel, Executive Director of APFED. “Whether newly diagnosed or managing an eosinophilic condition for years, participants will leave better informed and supported.”

The conference is held in collaboration with the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR), Duke GI, UNC School of Medicine, and Wake Forest University School of Medicine. APFED extends its gratitude to its Education Partners, including but not limited to Sanofi, Regeneron, AstraZeneca, and Takeda, for their generous support in helping to keep this event accessible.

Registration also includes access to a pre-conference webinar on June 12 at 12 p.m. ET, designed to help patients and caregivers better understand how improvement in eosinophilic esophagitis (EoE) is measured. In addition, registrants can attend an all-virtual Research Round-Up, taking place July 16–18, which will focus on other eosinophil-associated conditions such as hypereosinophilic syndromes, eosinophilic asthma, and others. The June conference will primarily focus on eosinophilic gastrointestinal diseases.

“We are delighted to be Presenting Sponsors of the 2025 Eos Connection Patient Conference,” said Piya Sircar, U.S. Head of Rhinology, Gastroenterology, & Allergy at Sanofi. “This annual event offers vital education and support to patients and families wherever they may be in their disease journey. We thank APFED for their steady commitment to providing much needed education, offering patient resources, and building a welcoming community for those suffering from eosinophil-associated disorders.”

“APFED’s Eos Connection is a unique opportunity for patients and families to learn from leading experts and connect with others who share their experience,” added Dr. Amr Radwan, Executive Medical Director for Medical Affairs at Regeneron. “We’re honored to support APFED’s mission to bring awareness, education, and hope to the EoE community.”

Registration for onsite or virtual registration is now open at apfed.org/conference.

About American Partnership for Eosinophilic Disorders (APFED)

Founded in 2001, the American Partnership for Eosinophilic Disorders (APFED) is a 501(c)(3) nonprofit organization that assists and supports patients and families affected by eosinophil-associated disorders, by providing education, creating awareness, supporting research, and promoting advocacy. To learn more, visit apfed.org.

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May 2025 Research Roundup: DDW Edition

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Digestive Disease Week (DDW) 2025, held in San Diego, showcased significant advancements in the understanding and treatment of eosinophilic gastrointestinal diseases (EGIDs), with many sessions focused on eosinophilic esophagitis (EoE).

The conference highlighted the growing recognition of mast cells’ role in EoE pathogenesis (how a disease starts and develops), suggesting new therapeutic targets beyond eosinophils. There was also an emphasis on patient-centered care, including less invasive diagnostic methods and personalized treatment plans, to improve quality of life for those with EGIDs.

Session Highlights

Ikuo Hirano Eosinophilic Gastrointestinal Diseases Symposium. A special session named in honor of the late Dr. Ikuo Hirano was held on May 3. Despite progress in understanding and treating EoE, some aspects of care remain debated, like whether allergy testing should be done routinely, how often endoscopies are needed to monitor the disease, and what treatments should be started first. This session aimed to review the latest research and explore different approaches to these important clinical decisions.

Eosinophilic Esophagitis: Swallowing Made Simple. A session titled “Eosinophilic Esophagitis: Swallowing Made Simple” focused on practical approaches doctors can take to manage EoE. It covered topics such as diet changes, medications, and medical procedures to help make swallowing easier and improve health for people with EoE.

Research Highlights

Barzolvolimab Shows Promise in EoE Treatment. Histology data from the Phase 2 “EvolvE” study of barzolvolimab in treating EoE was presented. Barzolvolimab is biologic that depletes mast cells. Biopsies showed that people with EoE had a lot of mast cells in their tissue, and these numbers matched up with how many eosinophils they had. The findings support the potential therapeutic benefit of barzolvolimab in EoE.

Dupilumab Shows Promising, Sustained Benefits for Eosinophilic Gastritis. Results of CEGIR’s DEGAS study were presented at DDW 2025, showing that dupilumab, a biologic therapy, significantly improved gastric eosinophil counts as well as histopathologic, endoscopic, and transcriptomic outcomes in adults and adolescents with eosinophilic gastritis (EoG) compared to placebo. These improvements were seen by Week 12 and sustained or enhanced through Week 36, supporting dupilumab’s potential as an effective treatment for EoG and suggesting its benefits may extend beyond EoE to other eosinophilic gastrointestinal diseases.

Abstract Awards

APFED & AAFA Poster Receives Award. Two poster abstracts related to the Life with EoE report were accepted for presentation at DDW.

The first poster was awarded as a “Poster of Distinction.” An average of 4,500 abstracts are submitted to DDW each year, and only 10% are recognized with this award.

2025 AGA-APFED Abstract Award in Eosinophilic GI Diseases

The AGA-APFED Abstract Award in Eosinophilic Gastrointestinal Diseases is a collaborative initiative between the American Gastroenterological Association (AGA) and APFED. This award recognizes outstanding research abstracts in the field of EGIDs presented at DDW. Recipients receive a small monetary award to offset travel expenses, enabling them to share their findings with the medical community. These awards are made possible by APFED donors. Congratulations to the 2025 recipients:

Maya Kota, Northwestern University Feinberg School of Medicine, Chicago, IL

Abstract Title: Validation Of The Eosinophilic Esophagitis Endoscopic Reference Score As A Predictor Of Disease Outcomes: Thinking Beyond Eosinophils

This study looked at how helpful a tool called the EREFS score is for predicting problems in people with EoE. The EREFS score is a system doctors use during an endoscopy to look at and grade how the esophagus appears inside.

The researchers reviewed medical records from 350 adults with EoE who had endoscopies. They wanted to see if the EREFS score could predict serious problems—like food getting stuck, needing the esophagus stretched (dilation), or going to the ER because of EoE—within one year.

They found that:

  • Higher total EREFS scores were linked to more problems.
  • The fibrostenotic sub-score (which looks at narrowing and stiffness) and the presence of strictures (tight areas) were especially good at predicting issues.
  • The inflammatory sub-score had only a small link to complications.

This study shows that the EREFS score could be a useful way to tell which patients are more likely to have trouble and may help doctors better track how EoE treatments are working in future research.

Angelica Rae Lackey, University of North Carolina

Abstract Title: Increasing social vulnerability impacts EoE presentation and decreases treatment response in eosinophilic esophagitis

This study looked at whether a person’s social vulnerability—a measure based on things like income, education, housing, and access to transportation—impacts their experience with EoE. Researchers used data from over 1,400 patients newly diagnosed with EoE at UNC and linked their zip codes to the Social Vulnerability Index (SVI), a scale from 0 to 1 (with 1 meaning the highest vulnerability).

This study found that:

  • People with higher social vulnerability often had delays in getting diagnosed.
  • They were more likely to show symptoms like vomiting, nausea, and stomach pain.
  • For those treated with swallowed steroid medicine (called topical corticosteroids), people with higher vulnerability were less likely to show improvement when their esophagus was rechecked.
  • This difference stayed even after considering other factors like age, race, and type of insurance.
  • However, this pattern wasn’t seen in people who used diet changes as treatment.

This study suggests that people who face more social or economic challenges may not respond as well to certain EoE treatments—possibly due to issues like stress, treatment access, or follow-through. More research is needed to understand why this happens and how to better support patients.

Tursun Turapov, University of Utah 

Abtract Title: Gastrointestinal Tract Mucosal Eosinophils In Healthy Adults

Researchers wanted to figure out what “normal” eosinophil levels look like in healthy adults. They asked 25 volunteers with no GI symptoms to undergo scopes of both their upper and lower digestive tracts. Biopsies were taken from many different areas, including the esophagus, stomach, small intestine, and colon.

Researchers found that:

  • Eosinophil levels varied widely depending on the location.
    • Very few eosinophils were found in the esophagus and rectum.
    • The small intestine and parts of the colon had the highest numbers.
  • Eosinophils were spread out evenly in the tissue and did not form clusters.

Understanding what is typical is key to developing better tests and treatment for EGIDs.

DDW in Photos

Paisley’s Journey with Eosinophilic Esophagitis (EoE)

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In honor of National Eosinophil Awareness Week, we’re resharing Paisley’s journey with eosinophilic esophagitis (EoE), from diagnosis to treatment. It’s a powerful patient story of raising EoE awareness from our 2023 newsletter archives. We thank Ali Platt for sharing her daughter Paisley’s story with APFED and for providing an update on Paisley’s journey with EoE today.

In March 2019, Paisley Kaye was born. As first-time parents, we couldn’t have been more elated. Her first year of life was somewhat normal. Any concerns we had were dismissed as “normal baby things.”

As time went on, symptoms evolved as a series of odd events. For example, Paisley was a pacifier lover. One day in January, she suddenly could not put it in her mouth without violently gagging. Her beloved cup of cow’s milk now caused severe flushing on her cheeks.

I was constantly sending messages to her primary care physician accompanied by photographs. Paisley was referred to countless specialists. When she had her initial visit with gastroenterology, I was skeptical that there was a good reason for them to evaluate her. I was stunned when the doctor wanted to perform an endoscopy. Was it really necessary? Were there less invasive things we could do first? Nevertheless, I scheduled the procedure and tearfully watched as they wheeled her away.

After the procedure, the doctor told me her esophagus visually looked good. However, we had to wait one week to learn biopsy results. I’ll never forget the day I got them. The doctor said, “I have an answer, and I also have a solution.” The answer was eosinophilic esophagitis, and he went on to say the solution was strict food elimination or a combination of a steroid and acid reducer.

Food elimination never seemed like an option for Paisley. Her diet was already so limited. We had been so excited to introduce baby foods to her and she hated them – all of them. This made so much sense in retrospect. After weighing options, we proceeded with medications. I gave it time for the medications to work, and I followed up with the remaining specialists we were referred to. Unfortunately, Paisley was still struggling, and even worse, the doctor could not offer any help beyond the initial solution.

Paisley was choking, pocketing food, vomiting in her sleep, developing rashes, and just overall uncomfortable. These symptoms would present daily. We got a second opinion from another gastroenterologist, who changed her medication regimen. Though it put her EoE into remission, her symptoms did not resolve.

We made the decision to travel out-of-state to a third gastroenterologist. It was this doctor who completely changed Paisley’s life. Simple, yet profound, he asked, “What if EoE isn’t the root of all of these symptoms?” While he didn’t have all the answers, he did his due diligence in finding a team who did. This meant more referrals, more specialists, more appointments, more lab work, more tests, and more procedures.

Since that day, Paisley’s journey has been long and plagued with ups and downs. She was diagnosed with reactive airway disease and environmental allergies, folliculitis, Loose Anagen Syndrome, connective tissue disease and tracheomalacia, and had adenoids obstructing her airway, which she has since had removed.

Finally, we had answers to persistent symptoms. Though we [her parents and medical team] aren’t convinced we’ve identified all the pieces to the puzzle, we are happy with the progress and the improvements to Paisley’s daily comfort and quality of life.

What’s Next for Paisley

I am pleased to say she was approved for biologic medication, which she started early July. Our goal is to wean her off steroids in the hope that her adrenal function returns to normal and eliminates her adrenal insufficiency diagnosis altogether. We’re also incredibly hopeful this will improve her esophageal tissue. Despite her eosinophil counts staying low, her endoscopies repeatedly show inflammation and damage. We’re also hoping other symptoms resolve, including her asthma-like troubles and skin manifestations

Paisley Prompts Wisconsin to Recognize Awareness Week

I felt compelled to do my part to advocate for the EoE community as a whole. Each year, APFED celebrates National Eosinophil Awareness Week, in which landmarks light up. I was unsuccessful in getting local landmarks to light up, due to their lighting capabilities. However, the representative for the Wisconsin Capitol Building suggested I submit information for a Proclamation in honor of National Eosinophil Awareness Week. I did just that, and it was approved!

While we couldn’t “light up” the Capitol building purple, we put our own spin on it by dressing head to toe in purple. When we arrived at the Capitol Building, Paisley found the clicking of her heels to be hilarious. She stood in front of the building, and we read the Proclamation together. We discussed how far she had come with her treatment and how many others she could help by sharing her story. Those passing by stopped to comment on her “cuteness,” which we used as an opportunity to educate and spread awareness. The highlight of the day was seeing Paisley so proud of herself.

Spreading Awareness in Your Community

I don’t believe there is any one way to spread awareness in your community. The best thing you can do is understand your strengths and run with them. Further, identify things your child enjoys so that spreading awareness is fun. I have a passion for photography, storytelling, and social media. Paisley is an entertainer, who loves making her own vlogs. We paired this together and began sharing her story on TikTok (@PaisleySays). This educates anyone who watches and connects us with others who share the diagnosis.

Another way to bring awareness is by starting a conversation. A single conversation can lead to so much more, as it has for us. Paisley and I challenge you to start conversations — don’t be afraid to tell your story!

May 2025 Update from Ali Platt

Since sharing our story, we’ve continued working to uncover the full picture of Paisley’s health. We’ve identified more pieces of her medical puzzle, but it remains an ongoing journey. Paisley continues to receive injections of her biologic medication to manage her EoE. While it has helped in several ways, an endoscopy in March 2025 revealed active disease.

We’re now fine-tuning her treatment regimen in hopes of minimizing symptoms of food impaction, dysphagia, and vomiting. Despite the setback, we remain hopeful. Each discovery, each adjustment, brings us closer to understanding her needs and giving her the quality of life she deserves.

Behind the scenes of every medical update is the ongoing administrative burden that comes with complex care. As Paisley’s mom and full-time caregiver, I continue to spend countless hours navigating insurance denials, filing appeals, coordinating with multiple providers, and advocating for the coverage she needs.

While we remain focused on her health, the emotional and logistical toll of fighting for medical access is constant. It’s a role that requires persistence, organization, and endless energy.

Paisley’s case and our experience navigating a broken healthcare system, unfortunately, isn’t unique. That’s why it’s so important to advocate for continued research and spread awareness for eosinophilic disease. Every voice helps move us closer to change.

Editor’s Note:
APFED would like to hear from those who have had challenges with insurance coverage of an FDA-approved medication indicated to treat EoE. If you live in the U.S. and have been prescribed a medication to treat EoE, please answer a few questions to help us advocate for better coverage.

EoE Medication Coverage Survey

Share Your Story!

Tell us about the impact eosinophilic disorders have had on your life: apfed.org/share

 

APFED Celebrates First-Ever World EoE Day on May 22

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FOR IMMEDIATE RELEASE

ATLANTA, GA — May 16 — The American Partnership for Eosinophilic Disorders (APFED) is proud to join the global launch of the “Unite for EoE: know the signs” campaign in observance of the first-ever World Eosinophilic Esophagitis (EoE) Day, taking place on May 22. This worldwide awareness initiative aims to educate the public about the symptoms of this chronic, allergic inflammatory disease of the esophagus.

EoE is often underdiagnosed or misdiagnosed, with many people enduring years of unresolved symptoms such as difficulty swallowing, food getting stuck, and persistent heartburn before receiving a diagnosis. If left untreated, EoE can lead to scarring and narrowing of the esophagus.

“EoE can greatly impact daily life, yet many people cope with symptoms for years without answers,” said Mary Jo Strobel, Executive Director of APFED. “This World EoE Day – the first ever – we’re encouraging people around the globe to spread awareness of EoE and talk to a doctor if they recognize symptoms of EoE in themselves or a loved one.”

As part of the campaign, APFED is disseminating a variety of resources, including:

  • A World EoE Day webpage featuring downloadable graphics, sample social media posts, and educational resources to empower individuals to raise awareness in their own communities
  • The “Could it be EoE?” tool to help individuals recognize common symptoms and guide conversations with healthcare providers
  • A Specialist Finder to connect patients with clinicians experienced in diagnosing and managing EoE

In addition, APFED will raise awareness through a World EoE Day social media campaign in collaboration with influencers to amplify the message and reach broader audiences.

To learn more and access the resources above, please visit apfed.org/eoeday.

APFED’s celebration of World EoE Day is supported by Abbott, Global Allergy & Airways Patient Platform, mBIOTA, Sanofi, Regeneron, and Takeda Pharmaceuticals America, Inc.​

About American Partnership for Eosinophilic Disorders (APFED)

Founded in 2001, the American Partnership for Eosinophilic Disorders (APFED) is a 501(c)(3) nonprofit organization that assists and supports patients and families affected by eosinophil-associated disorders, by providing education, creating awareness, supporting research, and promoting advocacy. To learn more, visit apfed.org.

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