National Volunteer Week, observed from April 20-26, 2025, is a time to recognize and encourage the invaluable contributions of volunteers nationwide. APFED volunteers play a crucial role in advancing our mission to improve the lives of those affected by eosinophil-associated diseases. This week is a great time to join our dedicated community and make a meaningful impact.
5 Easy Ways to Get Involved with APFED:
Become an APFED Volunteer: We periodically seek volunteers for short- and long-term projects in the areas of education, advocacy, and research. If you are willing and able to help, please complete our APFED Volunteer form to let us know more about you!
Help Us Amplify the Patient’s Voice: Your story has the power to spark recognition and create understanding. Share your eosinophilic journey and help make these conditions more visible. Your perspective can help others as better understand eosinophilic disorders.
Support Community Fundraising Events: Contribute to APFED’s mission by participating in or organizing community fundraising activities. Events like our upcoming Walk for HOPE not only raise essential funds to advance our mission, but also increase awareness about eosinophilic disorders.
Engage in National Eosinophil Awareness Week (NEAW) and Global Awareness Days: Help raise awareness during NEAW, observed this year from May 18-24. During this week, we’ll also observe World Eosinophilic Diseases Day on May 18 and World EoE Day on May 22. Take a look at special lightings that will be hosted around the U.S. for APFED’s “Light Up for Eos Awareness” initiative.
The Impact of Your Involvement
This National Volunteer Week, we celebrate all who give their time to support APFED’s mission—you make a real difference, and our community appreciates you! If you’re looking to make a lasting impact, now is the perfect time to get involved. Your efforts can help advance vital research, raise awareness, and strengthen advocacy efforts for the eosinophil disease community.
In 2018, while working as a pediatric gastroenterology (GI) dietitian, I noticed my son Cole developing worsening reflux and vomiting around 6 to 9 months of age. At first, I thought it was just reflux, but my experience as a dietitian told me it was something more. After a hospital visit for dehydration, an endoscopy confirmed that Cole had EoE, and we decided to proceed with a 4-food elimination diet (milk, egg, wheat, soy). After 12 weeks of strict elimination, Cole’s endoscopy results were normalized.
The journey wasn’t easy. As an infant, Cole relied heavily on amino acid-based formula (AAF) due to his limited diet. Transitioning to AAF was tough due to its distinct taste, but he eventually adapted. We also faced significant financial strain since our insurance didn’t cover the cost of the formula, specialty foods, and medical expenses.
Today, Cole is thriving at 7 years old, still following his 4-food elimination diet (4-FED) with supplemental AAF to ensure he meets his nutritional needs.
Diet Therapies for EoE
Elemental Diet (AAF) using AAF to replace all dietary antigens, has been a highly effective treatment for EoE. It can induce quick remission, with a 2020 study showing nearly 94% of patients achieving histologic remission. However, it can be challenging for older children or those with feeding disorders due to its restrictive nature. The diet can also be costly and emotionally taxing, especially for children who are socially impacted by food restrictions.
Empiric Elimination Diet involves removing foods based on clinical experience. Based on the recent 2025 ACG guidelines for EoE, the efficiency ranges of various elimination diets are as follows: dairy-only elimination shows an efficacy of 35-45%, dairy and wheat elimination ranges from 40-45%, 4-FED has an efficacy of 40-50%, and a 6-food elimination diet (6-FED) ranges from 40-70%. The 6-FED removes milk, egg, wheat, soy, nuts, and seafood. While effective, these more restrictive diets come with risks like nutritional deficiencies and the need for repeat endoscopies. Additionally, the emotional toll of restricting food choices, can contribute to disordered eating patterns. Working closely with a dietitian is essential to navigate these challenges.
Identifying and Filling Nutrient Gaps
Key Nutrients in Elimination Diets
A 2019 study explored the major nutrients in the top allergens and protein was shown to be the top nutrient in milk, egg, soy, nuts and seafood. While other protein sources can be used, they may not always be well accepted, and feeding aversions or inflammation from flare-ups can make it difficult to consume adequate protein. Milk is particularly crucial as it is a major allergen in EoE and provides a complete protein with all essential amino acids, along with vital micronutrients like calcium, iron, and vitamin D. Without cow’s milk, many children struggle to meet these needs.
Plant-based milks (PBMs) are a common replacement, but they often lack the protein, fat, and vitamins found in cow’s milk. Soy and pea milks are exceptions but may not be suitable for children with other allergies. PBMs may also contain added sugars, so choosing unsweetened varieties is essential. A 2020 position paper states that when PBMs are used as the primary milk source for older children, their diet should also include alternative sources of protein, calcium, iron, and vitamins B-12 and D; thus, consulting with a dietitian is recommended. Additionally, it states that when cow’s milk is contraindicated, hypoallergenic formula is preferable.
Nutrition Considerations with Elimination Diets
Before beginning an elimination diet, it is essential for a dietitian to review the current diet. This helps assess potential risks of nutritional inadequacy, especially as the number of restricted foods increases. The dietitian will evaluate nutrition status, overall feeding behaviors and risks of deficiencies in essential nutrients like protein, calcium, and iron. As the diet changes, monitoring by a healthcare provider is important to prevent long-term issues, including the risk of feeding difficulties or texture aversions.
My Experience: Identifying and Filling Nutrient Gaps
After analyzing Cole’s diet on a 4-FED, I became aware that his intake of calories, fat, and essential vitamins like B-vitamins, calcium, and iron was insufficient. This was especially concerning as these nutrients are crucial for growth and development. Using supplemental AAF became an important strategy to fill these gaps. AAF provides a hypoallergenic nutrition source and has been shown to support children with food allergies and EoE by preventing nutritional deficiencies.
Final Thoughts
Managing EoE and elimination diets is challenging, both emotionally and nutritionally. Parents of children with EoE must balance restrictive diets with the nutritional needs of growing kids. From my experience with Cole, careful planning and regular monitoring are essential. Specialized nutritional supplements, like AAF, are often needed to ensure that nutritional gaps are filled.
The journey is not easy, but with support from healthcare professionals and dietitians, families can successfully manage EoE. With persistence and the right resources, families can successfully navigate the complexities of EoE and elimination diets.
Kelli Miller, MS, RD, LD has a Bachelor of Science degree in Food and Nutrition from Florida State University and Masters of Science in Health and Nutrition from the University of North Florida. She is a Registered Dietitian (RD) and a Board Certified Nutrition Support Clinician from 2012-2022. For more than twelve years, Kelli has worked in the clinical setting as an RD. She has specialized in pediatric nutrition for 9 of those years, specifically GI/Allergy, Critical Care, and Oncology. During her 6 years as a GI dietitian, she grew the nutrition clinics for Feeding Difficulties, IBD, Carbohydrate Malabsorption, Liver Transplant, Eosinophilic Gastrointestinal Disorders, and General GI. Kelli is currently employed by Ajinomoto Cambrooke as a Clinical Specialist focusing on gastrointestinal and allergy nutrition. She is also mom to a 7-year-old boy with Eosinophilic Esophagitis and strives to find ways to improve outcomes in children with GI and allergic medical conditions.
The 2025 Joint Congress of the American Academy of Allergy, Asthma & Immunology (AAAAI) and the World Allergy Organization (WAO) was held February 28 to March 3 in San Diego, California.
Attendees from around the globe included allergists, immunologists, allied health professionals and others with a special interest in allergic and immunologic diseases.
APFED attended the meeting to offer clinicians educational materials and resources to help their patients learn about and manage eosinophil-associated disease. In the poster hall, we presented one of two research posters highlighting findings on our joint Life with EoE report in collaboration with the Asthma and Allergy Foundation of America (see the Research Abstracts/Posters of Interest below for details) and we participated in a number of discussions to help inform and shape advocacy initiatives, including access to therapies and strategies for continued federal outreach to encourage the full funding of medical research.
Below are some highlights from the meeting. Click or tap on each title to expand that section.
AAAAI/APFED Best Abstract on EGIDS Award
We offered a small $750 award for the best-scoring EGID research abstract to help cover the travel cost for the researcher to present findings at the 2025 Joint Congress. We are pleased to announce that fellow-in-training Grant Edland, MD received the award for the abstract “Improvement in Distensibility Is Greater With Dupilumab Compared to Other Treatments in EoE” that showed Dupilumab (a biologics) yields greater improvement in distensibility in pediatric EoE compared to non-dupilumab therapy and can be considered first-line treatment for fibrostenosis (scarring and narrowing as the result of repeated inflammation to tissue).
Dr. Edland presented as an oral abstract as part of the Monday, March 3 session, “Latest on Treatment Outcomes in Food Allergy and Eosinophilic Esophagitis.”
Sessions of Interest
Several sessions specific to eosinophil-associated disease were offered as part of the 2025 Joint Congress as well as industry-sponsored programming. Some of the highlights include:
Addressing eosinophilic inflammation
Pediatric hypereosinophilic syndrome
Strategies for EPGA treatment
Eosinophilic gastrointestinal disease: year in review
Optimizing transition of care for eosinophilic gastrointestinal disease from pediatric to adult
Functional lumen imaging probe in EoE
Esophageal vs non-esophageal eosinophilic gastrointestinal diseases: similarities and differences
Triggers and drivers of severe asthma, severe and difficult-to-control asthma and biologics in pediatric asthma
The International Eosinophil Society (IES) hosted a session titled “Emerging Classes of Eosinophil-Directed Precision Therapy: Current and Future Usage and Development.” This session focused on the latest advancements in precision therapies targeting eosinophils, discussing both current applications and future developments in the field.
Dr. David Hill (left) moderates the “Eosinophilic Gastrointestinal Diseases: Year in Review” session with speakers Dr. Mirna Chehade, Dr. Antonella Cianferoni, and Dr. Alfred Doyle.
Two posters at the 2025 Joint Congress showcased results of a study conducted in collaboration with APFED and Asthma and Allergy Foundation of America (AAFA) to better understand the patient journey and current state of EoE care in the United States. The project involved surveys and interviews with patients and caregivers and a survey of healthcare providers from various disciplines of medicine.
Poster 1: Treatment Adherence in Eosinophilic Esophagitis (EoE): Patient, caregiver, and clinician perspectives. Survey responses from allergists and immunologists highlights the critical role of collaboration with gastroenterologists in treating EoE. However, patient adherence remains a major challenge, with 76% of clinicians citing it as a key issue. While 87% report strong adherence to pharmacological treatments, only 40% see the same for diet therapy. Additionally, 64% of patients and caregivers find diet management difficult, emphasizing the need for multidisciplinary care and strategies to improve adherence. Learn more.
Hannah Jaffee, Mary Jo Strobel, Joy Chang, MD, Mark Holbreich, MD, Jonathan Medernach, MD, Sanaz Eftekhari, Matthew Greenhawt, MD
Poster 2: Seeking Care for Eosinophilic Esophagitis (EoE): Patients see multiple providers for EoE. Multidisciplinary care is common in EoE management, yet gaps remain—only 62% of patients see an allergist, and just 15% visit a dietitian. With diet playing a key role in treatment and EoE’s psychosocial impact, enhancing care models among specialists could improve outcomes and reduce redundancy. Learn more.
Hannah Jaffee, Mary Jo Strobel, Joy Chang, MD, Mark Holbreich, MD, Jonathan Medernach, MD, Sanaz Eftekhari, Matthew Greenhawt, MD
Co-authors Mary Jo Strobel, APFED and Hannah Jaffee, AAFA. Photo credit AAFA.
Dupilumab Efficacy in Adolescents and Adults with Eosinophilic Esophagitis With and Without Concurrent Elimination Diet: Post Hoc Analysis of LIBERTY EoE TREET at 52 Weeks
A study found that adolescents and adults with eosinophilic esophagitis (EoE) experienced significant improvements when treated with dupilumab, regardless of adherence to food elimination diets. The absolute mean changes in Dysphagia Symptom Questionnaire scores were comparable between those practicing food elimination and those who were not. This suggests that dupilumab’s efficacy in treating EoE is independent of dietary modifications. Learn more.
Antonella Cianferoni, Kathryn Peterson, Eric Low, Changming Xia, PhD, Tiffany Pela, Bram Raphael, Juby Jacob-Nara, Amr Radwa, MD, MB BChir
Baseline Characteristics Associated with Multicomponent Clinical Remission Following Dupilumab Treatment in Patients with Moderate-to-Severe Asthma
A post hoc analysis of the 52-week phase 3 LIBERTY ASTHMA QUEST study assessed 1,530 patients with moderate to severe asthma to determine if baseline characteristics influenced clinical remission with dupilumab. The analysis revealed that higher baseline blood eosinophil counts and elevated fractional exhaled nitric oxide (FeNO) levels were associated with increased odds of achieving clinical remission. Learn more.
Giorgio Canonica, Luis Pérez de Llano, Ian Pavord, Simon Couillard, Celeste Porsbjerg, Guy Brusselle, Mario Castro, MD, MPH, Anju Peters, MD, MSCI, FAAAAI, Arnaud Bourdin, MD, Arman Altincatal, Jason Kwah, Olivier Ledanois
High Incidence and Prevalence of Eosinophilic Esophagitis in the USA Identified: An Analysis of US Health Insurance Claims Data
A recent retrospective study indicates that the incidence and prevalence of eosinophilic esophagitis (EoE) in the United States have risen more than previously estimated. The study found that EoE is more common among individuals aged 18 to 64 compared to those younger or older. These findings underscore the growing need for effective management strategies for EoE across diverse age groups. Learn more.
Matthew Greenhawt, MD MBA MSc FAAAAI, Priya Bansal, MD, FAAAAI, Bridgett Goodwin, Siddhi Korgaonkar, PhD, Yiyan Liu, PhD, Juliana Meyers, MA, Carolyn Schaeffer-Koziol, Eric Shah, MD, MBA, Brian Terreri, PharmD, Evan Dellon, MD
Mepolizumab Reduces Need for Repeat Sinus Surgeries in Patients with Chronic Rhinosinusitis with Nasal Polyps
In Phase III of the SYNAPSE trial researchers found that mepolizumab significantly reduces the risk of repeat sinus surgery in patients with chronic rhinosinusitis with nasal polyps (CRSwNP). Read related press release.
Effect Of Randomized Treatment Withdrawal of Budesonide Oral Suspension On The Durability of Dysphagia Symptom Improvement In Patients With Eosinophilic Esophagitis: A Post Hoc Analysis of A Phase 3, 36-Week Trial
Researchers looked at how stopping budesonide oral suspension (BOS) treatment might affect how long the improvement in swallowing difficulties lasts for people with eosinophilic esophagitis. Of the 48 people studied, 25% maintained dysphagia symptom improvement. An average of 8.4 weeks was observed between BOS withdrawal and dysphagia symptom relapse. This suggests that for some patients, symptom improvements following 12 weeks of BOS therapy can be maintained after treatment is stopped. Link to research.
Priya Bansal, MD, Evan Dellon, MD, David Katzka, MD, Gary Falk, MD, Vincent Mukkada, MD, Brian Terreri, PharmD, Carolyn Schaeffer-Koziol, Jessamyn Blau, Cristian Gugiu, Bridgett Goodwin, Muna Tahir
Two-Year Efficacy and Safety of Benralizumab for the Treatment of Eosinophilic Granulomatosis with Polyangiitis
In this study, patients who completed the 52-week double-blind period of the MANDARA trial were invited to enter the open label extension during which they continued benralizumab or switched from mepolizumab to benralizumab. In this study, the patients with EGPA receiving benralizumab, had sustained improvements over two years regarding remission rates, oral glucocorticoids discontinuation, and baseline eosinophil depletion, with low relapse rates. Read the full abstract.
Michael Wechsler, MD, Parameswaran Nair, Nader Khalidi, Benjamin Terrier, Bernhard Hellmich, Arnaud Bourdin, David Jayne, David Jackson, Florence Roufosse, Christian Pagnoux, Ulrich Specks, Lena Börjesson Sjö, Calvin Ho, Maria Jison, Christopher McCrae, Sofia Necander, Eva Rodríguez-Suarez, Anat Shavit, Claire Walton, Peter Merkel.
AAAAI Poster Hall, credit to AAAAI.
Special Committees
APFED attended the EGID Task Force committee meeting (a special interest group of the AAAAI) and the AAAAI Lay Organization meeting at 2025 Joint Congress. These meetings gave us the opportunity to share and discuss advocacy initiatives APFED has embarked on, most recently encouraging full federal funding of medical research in the U.S. and protections for our community members who rely on Section 504 of the Rehabilitation Act of 1973 for reasonable accommodations. We also shared advances in disease awareness and education.
Exhibit Hall
APFED hosted a booth in the conference’s Exhibit Hall to provide healthcare providers with free print and digital resources to help their patients better understand and manage eosinophil-associated disease. Our booth saw great engagement, with attendees expressing their gratitude for the important work we do.
Carole Drexel, PHD and Maria Arnone, MS from Medlive stop by APFED’s booth to discuss educational programming for clinicians with Mary Jo Strobel and Bette Marchese from APFED.
We’re excited for next year’s AAAAI Annual Meeting in Philadelphia, Pennsylvania! We anticipate the 2026 AAAAI meeting will include a day-long symposium featuring research updates from CEGIR/TIGERs.
When faced with a diagnosis of an eosinophil-associated disease, such as eosinophilic asthma, Eosinophilic Granulomatosis with Polyangiitis (EGPA), or Hypereosinophilic Syndrome (HES), or another subset, you may have questions and concerns.
Eosinophil-associated disease are complex conditions, and making decisions about your treatment can feel overwhelming. One way to ensure that you’re receiving the best care possible is to seek a second opinion.
Why Consider a Second Opinion?
Confirming the Diagnosis
Eosinophil-associated diseases are often rare and can sometimes be challenging to diagnose correctly. The symptoms of these conditions can overlap with other illnesses, leading to potential misdiagnosis or delayed treatment. Seeking a second opinion allows another specialist to review your medical history, symptoms, and test results, which can either confirm your original diagnosis or provide new insights that may lead to a different treatment plan.
Exploring Treatment Options
There are multiple treatment approaches for eosinophil-associated diseases, and what works for one person may not work for another. A second opinion can introduce you to alternative therapies or new clinical trials that you might not have been aware of. This is especially important if your current treatment isn’t providing relief, if you are experiencing worsening symptoms, or if you’re experiencing side effects that are hard to manage.
Accessing Specialized Expertise
Eosinophil-associated diseases are often best managed by specialists who have experience with these specific conditions. If your initial diagnosis was made by a general practitioner or a non-specialist, a second opinion from a gastroenterologist, allergist, immunologist, rheumatologist, or pulmonologist who specializes in these diseases can provide you with a better understanding of your condition.
How to Seek a Second Opinion
Talk to Your Current Doctor
Start by discussing your desire for a second opinion with your current doctor. Most doctors will understand and support your decision. They can often recommend another specialist and provide the necessary medical records.
Find a Specialist
Look for a doctor who specializes in eosinophil-associated diseases. This might involve researching medical centers known for their work in with eosinophil-associated disease. You might also look at teaching hospitals or a clinic affiliated with a university, as these institutions often have specialists with the latest knowledge and access to cutting-edge treatments. Specialists can also be found through medical societies (examples include but aren’t limited to the American College of Gastroenterology, or the American Academy of Allergy, Asthma & Immunology. The American Partnership for Eosinophilic Disorders also offers a Specialist Finder.
Prepare Your Medical Records
Gather all relevant medical records, including test results, imaging studies, and a list of current medications. Your current doctor can tell you if these records are already digitally accessible to other doctors, or how you can request them from their office. Having these documents ready will help the second doctor provide an informed opinion.
Ask the Right Questions
During your second opinion consultation, ask specific questions about your diagnosis, the proposed treatment plan, and any alternatives. For example:
“Do you agree with the initial diagnosis?”
“Are there clinical guidelines available for my condition?”
“What other treatment options are available?”
“What are the potential side effects of the proposed treatment?”
“Are there any clinical trials or new therapies I should consider?”
Evaluate the Information
After receiving the second opinion, take time to evaluate the information. Compare the recommendations with your current treatment plan and consider your comfort level with the proposed options. It’s important that you feel confident in your care decisions.
This blog post is a research roundup of recent publications on eosinophilic diseases, including summaries, links, and citations for the following articles:
Immune System Reaction to Milk Proteins in Eosinophilic Esophagitis
A multi-institutional study led by researcher David A. Hill, MD, PhD, of Children’s Hospital of Philadelphia (CHOP), identified one of the allergens responsible for eosinophilic esophagitis (EoE) at a molecular level. The preliminary findings, published as a Correspondence Letter to The Journal of Allergy and Clinical Immunology, mark the first time researchers describe molecular details of how the immune system is recognizing food antigens in EoE. Based on this understanding of the milk allergen, the method could be replicated to identify other allergens that result in EoE. This work was supported by APFED donors through our HOPE Pilot Grant Award.
Julianna Dilollo, Alex Hu, Huiqi Qu, Karina E Canziani, Rachel L Clement, Sam J McCright, Wayne G Shreffler, Hakon Hakonarson, Jonathan M Spergel, Karen Cerosaletti, David A Hill. “A molecular basis for milk allergen immune recognition in eosinophilic esophagitis.” The Journal of Allergy and Clinical Immunology. Online January 31, 2025. DOI: 10.1016/j.jaci.2025.01.008.
Six-Month Asthma Control Score on Mepolizumab Predicts Remission in Eosinophilic Asthma
According to data published in The Journal of Allergy and Clinical Immunology: In Practice, among those with severe eosinophilic asthma who are treated with mepolizumab, a patient’s asthma control score at six-months while on this treatment is considered the “best predictor” of whether they will achieve remission in the 12 months that follow. “These results can be used to design a treat-to-target paradigm for asthma, in which treatment response is assessed at 6 months to predict clinical remission,” the study authors concluded. View the abstract and visual summary.
Yuto Hamada, Peter G Gibso, Erin S Harvey, Sean Stevens, Hayley Lewthwaite, Michael Fricker, Vanessa M McDonald, Andrew Gillman, Mark Hew, Vicky Kritikos, John W Upham, Dennis Thomas. Early Treatment Response to Mepolizumab Predicts Clinical Remission in Severe Eosinophilic Asthma. The Journal of Allergy and Clinical Immunology: In Practice, Volume 13, Issue 2, 333 - 342.e9
Exploring the Underlying Causes of Symptom Severity in Eosinophilic Esophagitis
The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) investigated the underlying causes of symptom severity in eosinophilic esophagitis (EoE) by analyzing gene expression in the esophagus. Findings suggest that the severity of symptoms in EoE may be related to changes in certain cells deep within the esophagus, not just the surface layer. This means that cells beneath the lining of the esophagus might play an important role in how EoE develops and how severe a person’s EoE symptoms become.
View the abstract and figures from the article published in The Journal of Allergy and Clinical Immunology: In Practice.
Read a blog post summarizing the study in the Rare Research Report by the Rare Diseases Clinical Research Network (RDCRN).
Seung Kim, MD, MSa ∙ Netali Ben-Baruch Morgenstern, PhDa ∙ Kasumi Osonoi, MDa ∙ Seema S. Aceves, MD, PhDb ∙ Nicoleta C. Arva, MD, PhDc ∙ Mirna Chehade, MD, MPHd ∙ Margaret H. Collins, MDe ∙ Evan S. Dellon, MD, MPHf ∙ Gary W. Falk, MD, MSg ∙ Glenn T. Furuta, MDh ∙ Nirmala P. Gonsalves, MDi ∙ Sandeep K. Gupta, MDj ∙ Ikuo Hirano, MDi ∙ Girish Hiremath, MD, MPHk ∙ David A. Katzka, MDl ∙ Paneez Khoury, MD, MHSm ∙ John Leung, MDn ∙ Robbie Pesek, MDo ∙ Kathryn A. Peterson, MD, MScip ∙ Maria A. Pletneva, MD, PhDq ∙ Jonathan M. Spergel, MD, PhDr ∙ Joshua B. Wechsler, MD, MSs ∙ Guang-Yu Yang, MD, PhDt ∙ Marc E. Rothenberg, MD, PhDa ∙ Tetsuo Shoda, MD, PhD. Nonepithelial Gene Expression Correlates With Symptom Severity in Adults With Eosinophilic Esophagitis. The Journal of Allergy and Clinical Immunology: In Practice, Volume 12, Issue 12, 3346 - 3355.e1. how the immune system is recognizing food antigens
Join us June 26-28 in Raleigh-Durham, NC, or online for Eos Connection 2025!
We use cookies to ensure that we give you the best experience on our website. If you continue to use this site we will assume that you are happy with it.Ok