All posts by Mary Jo Strobel

Medical Society Meetings, Fall 2025 (FMX, AAP, ACG, NASPGHAN)

APFED Blog, Mobile_Friendly, Research, Uncategorized, What's New

Each year, APFED attends medical meetings to share the patient perspective, strengthen collaborations, and to report back to our community highlights of the latest research and clinical developments. We attended a number of meetings this fall, which are outlined below.

2025 NASPGHAN Annual Meeting

The 2025 NASPGHAN Annual Meeting took place Nov 5-8 in Chicago. This event brought together pediatric gastroenterologists, hepatologists, nutrition specialists and allied professionals. APFED attended the meeting to learn important updates, research insights, and opportunities for education and advocacy. Below are some highlights from the meeting.

APFED-sponsored Outstanding EGID Abstract Awards. Donations to APFED enabled us to sponsor two abstract awards at NASPGHAN this year, outlined below. These small awards ($750) recognized excellent research and helped to offset the travel costs for the presenter to share their findings among their peers.

  • Unique gene signatures identify treatment-response and age-specific differences between adults and children with eosinophilic esophagitis. Krishan Chhiba, Michael White, Ming-Yu Wang, Barry Wershil, Nirmala Gonsalves, Joshua Wechsler. These researchers found specific patterns in gene activity that are unique to adults with EoE and to how people respond to an elimination diet. These findings may help us better understand age-related differences in EoE, uncover new pathways involved in the disease, and eventually guide more personalized dietary treatment options.
  • The correlation between esophageal distensibility with dysphagia scores in pediatric eosinophilic esophagitis is dependent on disease activity. Joshua Thariath, Jose Peraza, Ritam Patel, Zeinab Dehghani, Kaitlyn Keeley, Michael White, Joshua Wechsler. These researchers found that in children with EoE, worse swallowing symptoms were linked to a smaller measure of how well the esophagus stretches, meaning the esophagus was less able to stretch. This relationship was strongest when the disease was active and wasn’t seen in children whose EoE was in remission. These findings suggest that inflammation may play an important role in how severe swallowing symptoms feel.

Sessions. A few sessions focused on eosinophilic gastrointestinal disease were included in the NASPGHAN program this year, including:

  • A session on unsedated transnasal endoscopy (TNE) to provide practical guidance on establishing a TNE program in the clinic, to share findings from the NOSE UP Study on developing and validating a new skills assessment tool for pediatric TNE, and strategies to promote safety and patient/parent trust during a TNE procedure. The session ended with a talk describing new feasibility study that explored anesthesia-free transoral endoscopy using a modified pacifier in early infancy. This was a prospective, single-center feasibility study.
  • A session titled Current Approaches for Eosinophils in the Gut” included a pro/con debate on when to introduce biologic therapy in children with eosinophilic esophagitis (EoE),
  • A session explored advances in diagnosing and managing non-EoE eosinophilic gastrointestinal disorders (EGIDs), reviewing clinical features, monitoring recommendations, and emerging dietary and pharmacologic approaches.
  • Flash Abstract Highlights showcased new research that offered insights into treatment outcomes and disease mechanisms in pediatric EoE, including how esophageal distensibility relates to inflammation and fibrosis in EoE, and early research on potential therapy that could help reduce fibrosis by limiting fibroblast activation.

To see the accepted scientific abstracts for 2025 have been Published on JPGN Reports, visit https://onlinelibrary.wiley.com/doi/10.1002/jpr3.70080

 

2025 ACG Annual Scientific Meeting

The 2025 ACG Annual Scientific Meeting (Oct 24–29, Phoenix, AZ) drew GI clinicians, researchers, and allied professionals from across the field of gastroenterology. APFED attended this meeting to exhibit in the exhibit hall and provide attendees with professional and patient-friendly resources, and to meet with our partners to discuss ways to improve outcomes and quality of life for the families we serve.

We did not attend the scientific sessions at this meeting, but are providing a summary of key programming below as a courtesy. For full information about the ACG meeting this year, click or tap here: https://acg2025.eventscribe.net/index.asp

Sessions. A number of sessions at the ACG meeting were specific to eosinophilic diseases, with heavy emphasis on eosinophilic esophagitis. A few of the highlights are described below:

  • A session titled Step Up vs Step Down Therapy in Eosinophilic Esophagitis presented healthcare providers with a framework for positioning emerging therapeutic options, including topical corticosteroids, diet modifications, and biologics, within existing treatment paradigms for patients with EoE.
  • The “Mysteries Revealed: Unraveling Eosinophilic Gastroenteropathies” session described diagnostic challenges in patients with suspected eosinophilic gastroenteropathies, focusing on histologic criteria and treatment strategies.
  • Pills, Pens, and Slurries: Oh My! was a session that discussed updates and new guidelines for EoE treatment, including available pharmaceutical therapies for disease management.
  • A session entitled “A Practical Guide to Diet Therapy in Eosinophilic” provided clinicians with food elimination approaches in EoE and endoscopic assessment of remission.

Posters. A number of posters and abstracts about eosinophilic GI disease were showcased at the ACG meeting. A few of the highlights include:

  • “From ED to EoE: Improving Practices for Timely Diagnosis.” See this write up and interview with the researcher.
  • “Enhancing Awareness of Eosinophilic Esophagitis (EoE) Among General/Family Practitioners to Improve Early Recognition and Intervention: Measuring the Impact of Continuing Medical Education”. Access the poster.
  • “Diagnostic Codes Performance for Identification of Eosinophilic Gastrointestinal Diseases Varies by Reference Standard Definition and Disease Subtype” – Poster on coding/identification issues in EGIDs. Access the poster.
  • Case studies of complex EGID involvement (beyond EoE)
    •  “Concurrent Eosinophilic Esophagitis and Eosinophilic Gastroenteritis Presenting with Gastric Outlet Obstruction” Read more
    • Beyond the Usual Battle: Refractory Duodenal Ulcer From Overlapping Eosinophilic Enteritis and Esophagitis in a Young Soldier Requiring Combination Biologic Therapy” Read more

 

American Academy of Pediatrics (AAP)

APFED attended AAP national conference which was held Sept. 26-30, in Denver, CO to engage with pediatric specialists who are often the first type of clinician that parents speak to about symptoms of eosinophil-associated diseases. We shared professional and educational resources, answered questions, and raised awareness about early recognition and management.

FMX (American Academy of Family Practitioners)

APFED participated in FMX Family Medicine Experience which was held Oct. 5-9 in Anaheim. Our goal was to raise awareness of eosinophil-associated disease among family physicians who often play a key role in identifying symptoms and guiding families toward appropriate care. We provided tools and information to help clinicians better understand eosinophil-associated diseases and support their patients. These conversations help strengthen early diagnosis, improve care coordination, and expand awareness across primary care.

My EoE Journey: From Misdiagnosis to Management and Motherhood

APFED Blog, , ,

I was in my early twenties, freshly out of college, when I experienced something that would quietly but profoundly alter the course of my life. I was sitting at my cubicle, working as a Marketing Assistant, when I choked on a sip of water. Not food—water. It seemed strange but harmless at the time. A fluke, maybe. But soon, the choking started happening more frequently. Sometimes it was food, sometimes liquid, and each time I felt the same wave of confusion and rising panic. Something was not right.

In those early days, I had no idea what eosinophilic esophagitis (EoE) even was. I bounced from one healthcare system to another, desperate for answers. Each provider had a theory—acid reflux, GERD, ulcers (they said my stomach looked like a battlefield). I was prescribed PPIs and told to monitor my diet, and to be honest, I was in my twenties and refused to do a full elimination diet. Nor did I have the income to have an endoscopy done every three or so months. The episodes didn’t stop. My esophagus felt like a mystery organ—failing me and evading every explanation.

It wasn’t until I underwent multiple endoscopies that I finally received a diagnosis: eosinophilic esophagitis. Relief washed over me at first. I had a name for the thing disrupting my life. I was prescribed a steroid inhaler (used off-label to coat the esophagus), which I was hopeful about—but it failed to make a meaningful difference.

Getting that diagnosis also brought something else: anxiety. More than just the fear of choking was the fear of food itself. Every meal became a potential minefield. I started to dread eating in public, afraid of making a scene if something got stuck. I’d chew excessively, avoid certain textures, and sometimes skip meals altogether. The anxiety around food slowly became as overwhelming as the disease. I thought, “This is my life forever?!”

Professionally, I work in clinical trial technology, and my experience gave me a unique perspective on how new treatments are developed. So, when the chance came to join a clinical trial for EoE, I didn’t hesitate. I wanted to be part of something bigger — advancing the science that might help me and others like me. I enrolled in my first clinical trial with optimism.

Unfortunately, despite having active EoE, I didn’t qualify. The trial required a certain eosinophil count in three biopsy locations, and one of mine didn’t meet the threshold. It was disheartening. I had hoped for progress, but I felt stalled—once again at the mercy of a disease that didn’t fit neatly into diagnostic boxes.

Determined not to give up, I enrolled in a second trial. This one showed more promise, and I was actively participating for several months. But clinical trials aren’t easy. There are what we call “patient burdens”—logistics, check-ins, tracking symptoms, and in my case, commuting into the city. At one point, due to a device malfunction and some technical logging issues, I missed a week of entries. That small lapse disqualified me from continuing. I understood the importance of adherence in trials, but the reality of juggling life, work, and health made it incredibly challenging. It was an emotionally draining setback.

I was 32 when I finally tried a biologic for EoE – dupilumab. And almost immediately, for the first time since my diagnosis, I went into remission. The choking stopped. I could eat again—carefully, but freely. For the first time in years, I felt like I could breathe, metaphorically and literally.

In 2022, I became pregnant with my first child. Dupilumab had been my lifeline, but there wasn’t enough data on its use during pregnancy. After discussing with my doctor, we decided I’d stop taking it. Interestingly, my EoE symptoms went away during pregnancy. My doctor had mentioned that this was common—pregnancy hormones can suppress symptoms—and in my case, it was true. I had a smooth pregnancy, symptom-free. But three months postpartum, everything changed. I had my first choking episode since stopping the biologic. It was a wake-up call. I restarted the medication under medical supervision. Again, I wanted to continue breastfeeding, but there was little research on the medication during lactation. I pushed it as long as I could without the medication, but my symptoms—especially food impaction—became impossible to ignore.

Fast forward to 2024, when I had my second baby. Once again, pregnancy offered a strange relief—no symptoms at all. But just like last time, three months postpartum, the EoE came roaring back. One particularly terrifying episode involved food and water getting stuck for over 30 minutes. I started making arrangements for child care just so I could go to the ER. I was choking multiple times a week. It wasn’t just disruptive—it was terrifying. At that point, I had no choice. I had to go back on the medication, even while breastfeeding. My well-being had to come first. Since the very first injection, I haven’t choked since.

My most recent endoscopy showed that my esophagus couldn’t be dilated to the full amount—it had narrowed from years of inflammation and scarring—but the inflammation is now under control. On dupilumab, I’m living a normal life again. I can sit down at dinner with my husband and kids and not fear the worst. I can be present for my son and daughter, rather than worried I might end up in the ER.

Still, it’s hard not to reflect on how long it took to get here. The road was exhausting—full of trial and error, emotional tolls, and moments of genuine fear. Choking doesn’t just affect your throat—it affects your confidence, your mental health, and your relationship with the world around you. I’ve missed meals, missed moments, and lived with the kind of hypervigilance that only chronic illness can teach you.

Even now, I don’t consider my journey over. The weekly injection I take is a constant reminder that I’m managing something, not defeating it. I still hope for better treatments, for real remission, and one day, a cure. I’m committed to staying involved in research and advocating for more data—especially for women who want to become or are already mothers. We need more research on EoE during pregnancy and breastfeeding. We deserve to make informed choices, backed by science.

EoE is often invisible to the outside world. You can look perfectly fine while suffering internally. That’s why I share my story—because someone out there might be having their first choking episode and wondering what’s wrong. Someone might be navigating postpartum life, unsure of what symptoms to expect. Someone might be weighing treatment options or joining a clinical trial.

To those people: you’re not alone. EoE is complicated, misunderstood, and underdiagnosed—but it’s manageable. With the right care, with persistence, and with continued research, there’s hope.

If you’re living with EoE, or suspect you might be, trust your body and keep advocating for yourself. It took me a decade to get from confusion to control. I hope your journey is shorter—but even if it’s not, know that there’s a path forward.

And to the researchers, clinicians, and trial coordinators out there: thank you. Your work matters. You’re changing lives—one patient, one injection, one study at a time.

Jessica recently spoke at APFED’s 2025 All-virtual Research Round Up to discuss her experiences with clinical trials for EoE. A clip of the interview is below:

Jessica Grady is a B2B marketing leader with a strong background in life sciences and SaaS. With expertise in marketing operations, customer marketing, and demand generation, she brings both strategic insight and empathy to her work. Her personal experience as a clinical trial participant fuels her passion for improving the patient experience in research. Jessica holds a master’s degree in marketing and lives outside Philadelphia with her husband, Matt, and their two children. She enjoys spending time with family and friends — especially around a good meal (when she’s not avoiding her EoE trigger foods).

 

APFED Celebrates National Eosinophil Awareness Week with New Initiatives

Press Releases, ,

FOR IMMEDIATE RELEASE

ATLANTA, GA — May 12 — National Eosinophil Awareness Week (NEAW) returns May 18–24, 2025, marking 18 years of progress and public engagement initiatives led by the American Partnership for Eosinophilic Disorders (APFED).

Eosinophils (pronounced ee-oh-sin-oh-fills) are a type of white blood cell that plays an important role in the body’s immune defense. However, when present in excessive numbers, eosinophils can cause chronic inflammation and tissue damage—a hallmark of eosinophil-associated diseases. These conditions, which can affect the gastrointestinal tract, lungs, skin, and other organs, impact both children and adults and are often misunderstood or misdiagnosed.

Since its inception, NEAW has provided a vital platform to raise awareness among the public and healthcare professionals, with the goal of promoting earlier diagnoses and improving patient outcomes.

To commemorate this year’s observance, APFED will launch a series of initiatives designed to raise awareness and support for patients and their families. Activities include:

  • Distribution of free educational resources to help individuals and organizations share accurate, accessible information
  • A social media campaign highlighting signs and symptoms of eosinophil-associated diseases, encouraging timely medical attention
  • Coordinated magenta lightings of landmarks, bridges, and buildings across the U.S. to visually amplify awareness

APFED will also host its 2nd Annual Virtual Walk for HOPE, a community-driven fundraiser supporting research into eosinophil-associated diseases. Participants are invited to walk, run, bike, or hike in their local areas to help advance understanding and improve outcomes.

Additionally, two global observances will take place during the same week:

  • World Eosinophilic Diseases Day (May 18) – A global initiative to educate, advocate, and drive progress for all eosinophil-associated conditions
  • The inaugural World EoE Day (May 22) – A new awareness day focused on eosinophilic esophagitis (EoE), a chronic immune-mediated condition where eosinophils accumulate in the esophagus, causing inflammation and difficulty swallowing

“National Eosinophil Awareness Week is a time to educate and bring attention to eosinophil-associated diseases among the public and medical communities,” said APFED Executive Director Mary Jo Strobel. “When awareness increases, the diagnostic journey shortens, care becomes more effective, and the entire community is better supported. Our goal is to make daily life better for those affected.”

APFED’s celebration of this year’s National Eosinophil Awareness Week is supported by AstraZeneca, Nutricia Neocate®, Sanofi, Regeneron, and Takeda.​

For more information about NEAW activities, resources, a calendar of special lightings, and ways to get involved, visit apfed.org/NEAW.​

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.

###

Critical NIH-Funded Research on Eosinophilic Gastrointestinal Diseases Abruptly Halted

Press Releases

FOR IMMEDIATE RELEASE

Media Contact:
media@apfed.org, 713-493-7749

Critical NIH-Funded Research on Eosinophilic Gastrointestinal Diseases Abruptly Halted
National Patient Advocacy Organization Urges Action to Protect Patients

Atlanta, GA – April 20, 2025— The unforeseen loss of an opportunity to renew an NIH grant to support the research of eosinophilic gastrointestinal disease (EGID) has left tens of thousands of patients and their loved ones with dashed hope.

For over a decade, the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) advanced the diagnosis and treatment of EGIDs through a vital NIH-supported research network. This sudden funding halt threatens to derail clinical trials, disrupt critical research, and harm the very patients CEGIR was created to help.

CEGIR (Grant 3U54AI117804), part of the NIH’s Rare Diseases Clinical Research Network, united top scientists, clinicians, and patient advocates to study these chronic, often debilitating diseases. Since 2014, the American Partnership for Eosinophilic Disorders (APFED) has also supported CEGIR with additional funding from the patient community.

“The consequences of this decision will fall hardest on patients and their families,” said Mary Jo Strobel, Executive Director of APFED. “These families already shoulder the burden of diseases that are under-recognized and under-treated.”

CEGIR’s application was not denied due to scientific merit. Rather, it was withdrawn over a technical issue related to NIH’s foreign component policy. Though their collaboration includes experts in two countries, all work is conducted at U.S. institutions with no funding sent abroad. In previous successful funding cycles, they had indicated “yes” to the foreign component question and submitted a required form later upon request.

CEGIR submitted their renewal application in August 2024 and had a scientific review scheduled. In April 2025, just weeks before the review date, they were notified of withdrawal. They are not permitted to revise the application or submit the form retroactively.

“This setback is deeply saddening,” said Ryan Piansky, a graduate student and patient advocate, who lives with an eosinophilic gastrointestinal disease and advocated for years to have federal funding directed to EGID research. “Our patient community has worked hard to be ‘seen’ in the research arena. For decades, we’ve raised awareness, educated, advocated for funding and raised money ourselves to help fuel progress.  To see this research paused now, without cause or recourse, is devastating.”

Most EGID subtypes still lack FDA-approved therapies. CEGIR’s research has informed treatment guidelines, supported drug development, and offered hope to families. Their work contributed to the first FDA-approved treatment for eosinophilic esophagitis (EoE) in 2022.

The impact extends beyond care. CEGIR’s long-term studies revealed insights into disease progression and their training programs helped foster the next generation of EGID experts. Without continued support, years of progress are at risk.

APFED is urging Congress and federal agencies to act swiftly to protect this essential research by reinstating the U54 renewal applications such as CEGIR’s so that they may undergo a fair and full scientific review.

“Congress has long recognized the importance of eosinophilic diseases,” Strobel added. “We ask that commitment continue so that progress in rare disease research isn’t delayed.”

APFED remains steadfast in its mission and will continue to advocate for CEGIR’s work and support scientific advancement through its HOPE on the Horizon program.

For more information or to join APFED’s efforts, visit www.apfed.org.

***

About APFED
The American Partnership for Eosinophilic Disorders (APFED) is a 501(c)(3) nonprofit organization dedicated to improving the lives of those affected by eosinophil-associated diseases through education, research, advocacy, and support.

 

Federal Funding for Eosinophilic GI Disease Research Halted

Advocacy, Announcements, Media Info, Press Releases, Research, What's New

May 5, 2025 Update: We’re excited to share promising news! The NIH has announced that a new opportunity to apply for funding through the Rare Diseases Clinical Research Network (RDCRN) is expected to open as early as next month. This means that CEGIR (the Consortium of Eosinophilic Gastrointestinal Disease Researchers) will have the chance to resubmit its application for continued support. APFED is deeply grateful to everyone in our community who raised their voices with us. Your emails, personal stories, and outreach to decision-makers were heard and considered. Together, we helped underscore the urgent need for ongoing investment in rare disease research, including the groundbreaking work of collaborative networks like CEGIR. We are deeply grateful for your support and will continue to keep you updated with new developments.

You can read the NIH’s official Notice of Intent at https://grants.nih.gov/grants/guide/notice-files/NOT-TR-25-008.html

APFED Statement on Disqualification of CEGIR Renewal Application

We have received a most discouraging notification that the critical research being conducted by the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR, Grant 3U54AI117804), funded by National Institutes of Health, has come to an abrupt halt. APFED, the patient community, scientists and doctors have poured their hearts and dollars into making CEGIR the successful research consortium it is today. The consequences of this decision will fall hardest on patients and their families, particularly children, who face the greatest burden of disease. The disruption of this research risks significant setbacks in care, with serious and lasting impacts on health and quality of life.

CEGIR brings together some of the most brilliant and dedicated scientists across the United States, working collaboratively with patient advocates to advance research into eosinophilic gastrointestinal diseases (EGIDs). For 11 years, CEGIR has operated with funding from the National Institutes of Health (NIH) through the Rare Diseases Clinical Research Network. During that time, APFED has awarded significant supplemental funding—using contributions from patients and families themselves—to further support CEGIR’s vital work.

The decision to disqualify CEGIR’s reapplication for funding consideration is not the result of scientific failure or merit. Rather, it results from administrative decisions tied to newly implemented federal policies and the sudden enforcement of regulations that had neither been previously applied nor clearly communicated.

The consequences are devastating: the sudden end to CEGIR’s clinical trials and the halt of disease-specific research. Eosinophilic gastrointestinal diseases have no clearly defined cause, yet they lead to lifelong, often severe illness. The impact on those affected is profound, marked by significant suffering, loss of intestinal function, and diminished quality of life. Patients and families living with rare and chronic EGIDs are directly and immediately harmed by this disruption. These individuals depend on sustained, science-driven progress to bring hope, relief, and the possibility of effective treatment.

Most EGID subtypes still lack a single FDA-approved therapy. CEGIR’s research has already begun to change that outlook in meaningful ways. To bring this work to an abrupt and unnecessary end, with limited regard for its human cost, is a setback with lasting consequences for the rare disease community.

The decision to disqualify CEGIR’s application for renewed funding is a devastating blow to the patients and families CEGIR was created to help. Lives are put on hold, opportunities for breakthrough treatments are lost, and years of trust in the research system are shaken.

Our community deserves better. Patients should not be casualties of shifting administrative policies.

For years, the U.S. Congress has long-recognized the impact of eosinophilic diseases. In 2007, the House of Representatives passed HR 296, formally designating the third week of May as National Eosinophil Awareness Week. In 2013, Senate report language in the HHS appropriations bill requested an NIH update on eosinophilic disease research initiatives, referencing a pivotal publication (Bochner BS, Book W, Busse WW, et al. J Allergy Clin Immunol, 2012;130(3):587–596) that helped guide research priorities for eosinophil-associated disorders.

CEGIR’s progress over the past 11 years has been extraordinary. In 2022, the first FDA-approved treatment for eosinophilic esophagitis (EoE) became available, thanks in part to research supported by NIH. This is the kind of progress now at risk. CEGIR’s clinical trials and research programs have generated essential data that has provided the foundation for treatment guidelines and supported FDA approvals. CEGIR’s long-term natural history study and trials evaluating emerging therapies are crucial to advancing care and improving outcomes. The CEGIR Trainee Program is vital for developing the next generation of clinician-researchers focused on EGIDs, ensuring continued innovation and improved care for patients with these rare and complex conditions.

We are deeply disappointed by the abrupt shutdown of more than a decade’s worth of groundbreaking work due to shifting administrative directives. APFED supports the responsible use of taxpayer dollars and CEGIR has delivered exceptional returns on investment in the form of diagnostic advancements, treatment development, and improved patient care.

We urge federal leaders and policymakers to consider the real-world consequences of these decisions. We call on Congress to act swiftly and decisively to protect vulnerable Americans—patients with rare diseases—who are left to suffer as vital research initiatives are shut down without warning or recourse.

APFED stands in solidarity with the individuals and families affected by this decision and will continue to advocate for transparency, consistency, and unwavering support for scientific discovery that puts patients first. We vow to continue efforts to move research forward until every patient who suffers from eosinophil-associated disease has access to an FDA-approved therapy.

Issued by the American Partnership for Eosinophilic Disorders (APFED)

Related Press Release

Action needed by Tuesday, April 22!

Visit Congress.gov to look up who represents you and how to contact them. Given the urgent nature, phone calls may garner the fastest attention, but any communication is helpful. Urge your Congressional members to ask the NIH to facilitate a fair scientific review of U54 renewal applications.

SAMPLE MESSAGE: 

Subject: Urgent: Please Help Reinstate a Critical Research Grant for Eosinophilic Diseases

Dear [Senator/Representative Name],

I am a [briefly introduce yourself: e.g., parent of a child with an eosinophilic gastrointestinal disease in [Your State], patient living with EoE, etc.]. I’m writing to express my deep concern about an urgent issue affecting federally funded research for rare diseases like mine.

The renewal application for the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR), grant 3U54AI117804, was recently denied the opportunity for scientific review due to an administrative oversight tied to newly enforced NIH submission rules. Unless action is taken, this decision could permanently halt over a decade of progress in treating eosinophilic gastrointestinal diseases (EGIDs).

I respectfully urge you to:

  • Request that NIH reinstate the U54 renewal applications so they may undergo full scientific review.

  • Ensure that NIH grants missing the newly required Foreign Justification attachment are still reviewed, and not automatically disqualified without fair consideration.

For more than ten years, CEGIR has led groundbreaking research, supported FDA approvals, and shaped clinical guidelines that improve care for tens of thousands of Americans living with EGIDs. The consortium’s work has been a lifeline to families like mine. Its abrupt disruption risks undoing critical progress and delaying desperately needed treatment options.

Please help protect this vital research by encouraging NIH Director Dr. Jay Bhattacharya to reinstate U54 renewal applications, like CEGIR’s proposal 3U54AI117804) for scientific review before April 22 NIH Final Scientific Review meeting.

Thank you for your time and for standing with patients who live with rare, chronic diseases.

Sincerely,
[Your Full Name]
[Your City, State]
[Optional: Your email or phone number]