All posts by Mary Jo Strobel

APFED Launches Second EoE Awareness Campaign in New York City’s Times Square

Announcements, APFED Blog, In the News, Press Releases, What's New

Digital advertisements teach visitors symptoms of eosinophilic esophagitis (EoE)

(Atlanta, GA)—The American Partnership for Eosinophilic Disorders (APFED), a leading advocacy organization for eosinophil-associated disease, has launched its second awareness campaign in the legendary Times Square in New York City.

This campaign is designed to highlight some of the symptoms of eosinophilic esophagitis (EoE) and prompt those who recognize symptoms to speak with a doctor.

EoE is a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). Symptoms may include, but aren’t limited to difficulty swallowing, reflux, vomiting, and food getting stuck in the throat. Left untreated, EoE may cause narrowing the esophagus and permanent damage.

The general public has low awareness of EoE and research shows that the majority of patients delay seeking care because they attribute symptoms to other causes. Launched in October and running until the end of December, APFED’s series of informative digital advertisements is featured on a digital billboard located at the northeast corner of the intersection at 1500 Broadway and West 43rd Street.

“This campaign is a unique opportunity to reach and engage a broad audience on recognizing symptoms that could indicate EoE,” shares Mary Jo Strobel, APFED’s Executive Director. “EoE is chronic and progressive, and the duration of the untreated disease can lead to permanent damage of the esophagus. Therefore, it’s critical that we teach people common symptoms of and encourage them to seek medical consult if they recognize these symptoms.”

This is APFED’s second campaign in Times Square this year. The first set of ads ran from April through June and focused on symptom recognition among different age groups. This fall campaign intersperses holiday imagery with awareness messages.

APFED is grateful to Sanofi and Regeneron for their support of the campaign.

“We are proud to work alongside the American Partnership for Eosinophilic Disorders (APFED), who continues to drive EoE awareness in thought-provoking and innovative ways,” said Vanessa Wolfeler, Head of Respiratory and Gastroenterology at Sanofi. “By transforming commonly overlooked symptoms into visual messages aimed to help patients seek support, APFED demonstrates the ways in which EoE may impact celebrations, holidays, and other events involving food. Sanofi and Regeneron are committed to supporting the lives of those impacted by this chronic, progressive disease.”

“As longstanding partners with APFED, Regeneron and Sanofi are committed to our shared goal of driving awareness of EoE in support of patients living daily with this poorly understood and under-recognized disease,” said Michael Jones VP, US Commercial Respiratory and Gastroenterology, Regeneron. “We thank APFED’s leadership in driving patient-informed, creative campaigns to better reach those who may be suffering without answers.”

Those in New York City this month can help APFED increase EoE awareness by posting photos of the ads to social media, tagging APFED and using the hashtag #EosAware.

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About the American Partnership for Eosinophilic Disorders (APFED)
The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.  https://www.APFED.org

APFED Board of Directors Welcomes New Officer

Announcements, Press Releases, What's New

December 13, 2023 (Atlanta, GA) –The Board of Directors of the American Partnership for Eosinophilic Disorders (APFED) is thrilled to welcome its newest officer, Mrs. Sarah Castro. Mrs. Castro is an experienced nonprofit professional with expertise in development, community fundraising, and volunteer engagement.

Shortly after her son was diagnosed with eosinophilic esophagitis, she found APFED’s community and was determined to help. “I was lost before my son’s diagnosis and was extremely lost and upset after the diagnosis was given,” Mrs. Castro shares. “I attended an APFED conference, and my life changed. The level of education, information, and support that APFED brings to patients and families is incredible. It’s an honor to join the board and to help guide the organization’s important work.”

“We are delighted to welcome Mrs. Castro’s expertise to our board,” stated Dr. Wendy Book, President of APFED. “With a wealth of experience and a passion for development, accompanied by the firsthand knowledge of the impacts of eosinophil-associated disease, she brings invaluable insights that will undoubtedly help APFED to have greater impact and achieve new heights in our mission.”

Founded in 2001, APFED is a non-profit organization dedicated to patients and their families coping with eosinophil-associated diseases. Eosinophil-associated diseases are chronic inflammatory conditions characterized by elevated levels of eosinophils (a type of white blood cell) in one or more specific areas of the body. The increased number of eosinophils cause inflammation and damage to tissues and organs. These chronic diseases require lifelong treatment and symptoms may be debilitating.

“Our team is excited to work with Sarah Castro and we wholeheartedly congratulate her on her appointment to APFED’s Board of Directors,” said APFED Executive Director, Mary Jo Strobel. “We eagerly welcome her guidance and leadership as we work to improve the lives of patients with eosinophil-associated disease.”

About the American Partnership for Eosinophilic Disorders (APFED)
The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. https://apfed.org/

New EoE Awareness Campaign in New York City’s Times Square

Announcements, APFED Blog, Press Releases, What's New

New digital advertisements will teach visitors about eosinophilic esophagitis (EoE) and its symptoms

Atlanta, GA – The American Partnership for Eosinophilic Disorders (APFED), a leading advocacy organization for eosinophil-associated disease, is thrilled to announce the launch a fall awareness campaign in Times Square, New York City. This campaign is designed to highlight some of the symptoms of eosinophilic esophagitis (EoE) and prompt the people who recognize symptoms to speak with their doctor.

EoE is a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). Symptoms may include, but aren’t limited to difficulty swallowing, reflux, vomiting, and food getting stuck in the throat. Left untreated, EoE may cause narrowing the esophagus and permanent damage.

From October until the end of December, a series of informative advertisements designed to educate the public about EoE symptoms across various age demographics will be featured on a digital billboard located at the northeast corner of the intersection at 1500 Broadway and West 43rd Street.

“Recognizing symptoms that could indicate EoE is crucial for earlier diagnosis and plays a pivotal role in ensuring that patients receive timely treatment,” Mary Jo Strobel, APFED’s Executive Director, shares. “This campaign presents a fantastic chance to engage a wide-ranging audience and provide them with information about the symptoms of EoE and prompt them to seek medical consult if they recognize these symptoms in themselves or their loved ones.”

APFED is grateful to Sanofi and Regeneron for their support of the campaign.

For more information about EoE or other subsets of eosinophil-associated disease, please visit apfed.org.

 

About the American Partnership for Eosinophilic Disorders (APFED)

The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. apfed.org

 

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APFED Honors World Eosinophilic Diseases Day, May 18, 2023

Announcements, Media Info, Press Releases, , , , ,

Atlanta, GA (May 18, 2023) – The American Partnership for Eosinophilic Disorders (APFED) is celebrating  the 2nd annual World Eosinophilic Diseases Day May 18, 2023, to increase global awareness of these conditions.

Eosinophils are a type of blood cell that have a role in immune system responses to medical conditions such as infections, inflammation, and allergies, to name a few. If a person has too many eosinophils without another known cause, it may be because of an eosinophil-associated disease.

The diagnosis depends on where in the body the eosinophils are found, including the gastrointestinal tract, heart, sinuses, blood, lungs, bladder, connective tissue. Symptoms may include, but are not limited to, trouble swallowing, food getting stuck in throat, stomach pain, loss of appetite or weight loss, nausea and/or vomiting, diarrhea, chest pain, and wheezing.

Eosinophil-associated diseases are chronic conditions that require ongoing medical care. The symptoms and day-to-day management of these conditions may significantly impact quality of life. The conditions affect both adults and children.

“Eosinophilic diseases affect people around the globe,” said Mary Jo Strobel, APFED’s Executive Director. “By uniting with patient advocates around the world, we can speak with a unified voice, calling attention to the myriad of symptoms patients experience. Elevating awareness of these conditions can help reduce diagnostic delays and lead patients to treatments faster.”

This year, in celebration of World Eosinophilic Diseases Day, APFED announced new resources, including:

 

  • A podcast episode (number 023) featuring Dr. Florence Roufosse, President of the International Eosinophil Society, who discussed global unmet needs for eosinophilic diseases.
  • A multicomponent cross-sectional needs assessment study for EoE in the US. APFED collaborated on this study which aimed to understand the patient journey for EoE as well as health care providers’ awareness of and practice around EoE. The summary is available in a report called Life with EoE: The Patient Experience and Opportunities to Improve Care in the U.S.
  • A plain language summary of a landmark patient charter for eosinophil-associated diseases, which was the outcome of a global collaboration. The summary was published in the journal Immunotherapy.

 

To learn more about eosinophil-associated diseases, visit apfed.org.

 

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. 

2022 Annual Meeting of the American College of Gastroenterology

Research, What's New, , ,

APFED was onsite at the American College of Gastroenterology’s (ACG) Annual Scientific Meeting and Postgraduate Course which took place in Charlotte, NC, Oct. 21-26. Attendees from around the world gathered to learn the latest scientific advances in gastrointestinal research and treatment of digestive diseases.

APFED had a table in the exhibit hall to offer clinicians with resources to increase their understanding of the latest in diagnostics and treatments of these conditions, as well as educational material to share with their patients.

Pictured right: APFED executive director (center) with team members from Ellodi Pharmaceuticals. Ellodi is developing APT-1011, and investigational drug designed to deliver  fluticasone propionate to the esophageal mucosa as a potential therapy for EoE. 
Pictured left: APFED had a booth in the exhibit hall to provide clinicians with patient-friendly information about eosinophil-associated diseases and professional resources. 

Below are a few highlights from research abstracts presented at the meeting.

  • Results from KRYPTOS, a Phase 2/3 Study of Lirentelimab (AK002) in Adults and Adolescents With EoE was presented. While lirentelimab was effective in safely reducing histologic disease activity in most patients, but especially adolescents, with eosinophilic esophagitis (EoE), it did not meet the Dysphagia Symptom Questionnaire symptom co-primary endpoint, although in adolescents there was a trend in DSQ response over placebo. Learn more.
  • A poster that APFED co-authored, entitled “High Burden of Disease and Associated Costs for Eosinophilic Gastrointestinal Diseases: Results From an Online Patient-Centered Research Network” was presented. The findings showed that patients with non-EoE EGIDs experience high healthcare burdens, frequent medical care (average of 1 heath care encounter/month) and significant out-pocket costs (averaging $1,000/year). Learn more.
  • Dr. Evan Dellon from University of North Carolina at Chapel Hill presented an oral abstract entitled “Dupilumab Improves Clinical, Symptomatic, Histologic, and Endoscopic Aspects of EoE up to 24 Weeks: Pooled Results From Parts A and B of Phase 3 LIBERTY-EoE-TREET.” It was noted, “The findings were that the pooled efficacy and safety data for parts A and B of the phase 3 trial of Dupilumab are consistent with the results of the individual parts of the study that were previously reported, and which led to the drug being approved for EoE.” Learn more.
  • Dr. Amrit K. Kamboj from Mayo Clinic in Rochester, MN presented a plenary session entitled, “Development and Validation of a Clinical Tool to Identify Patients Who Do Not Need Biopsies When Eosinophilic Esophagitis Is Suspected” describing work to develop and then validate a predictive model that accurately identifies patients with “a low likelihood of EoE where unnecessary biopsies can be avoided, potentially resulting in cost and time savings, and lower risk.” Learn more.
  • A poster entitled “Hospitalization Outcomes and Racial Disparities in Eosinophilic Esophagitis Patients: An Analysis of the National Inpatient Sample Data from 2016 to 2019” was presented. The findings indicated that “patients from African American descent admitted [into the hospital] with EoE appear to have similar mortality as compared to white patients but higher morbidity in the form of longer [length of stay] and longer time to EGD.” Learn more.

 

Other research abstract titles of interest are below. You may access the poster presentations here.

    • Esophageal Cytology Collection Device for Assessment of Esophageal Eosinophilia in Eosinophilic Esophagitis: Real World Experience
    • Co-Localization of Immunoglobulin G4 (IgG4) and Milk Proteins Is Associated With Eosinophilic Esophagitis Disease Activity\
    • Dupilumab Reduces the Emotional and Dysphagia-Related Impacts of Eosinophilic Esophagitis to Improve Health-Related Quality of Life
    • Health Care Resource Utilization and Costs Among Eosinophilic Esophagitis Patients in the United States
    • Opportunities for Virtual Care in Eosinophilic Esophagitis: Real-World Dietary Therapy Practice
    • Esophageal Cytology Collection Device for Assessment of Esophageal Eosinophilia in Eosinophilic Esophagitis: Real World Experience
    • The Epidemiology of Inflammatory Bowel Disease in Eosinophilic Esophagitis in the United States: Results From a Population-Based National Study
    • Physician-Documented Symptoms and Treatment Among Patients With Eosinophilic Esophagitis in the United States: Evidence From Real World Clinical Practice
      Characteristics of and Healthcare Cost Drivers Among U.S. Patients With Eosinophilic Esophagitis With High versus Non-High All-Cause Costs: An Analysis of Insurance Claims Data
    • Provider Beliefs, Practices, and Perceived Barriers to Dietary Elimination Therapy in Eosinophilic Esophagitis
    • Burden of Eosinophilic Esophagitis 2016-2019: NIS-Based Retrospective Analysis
    • A Retrospective Study on the Geographic Trends of Eosinophilic Esophagitis (EoE) in the United States
    • Examining the Diagnostic Pattern of Eosinophilic Esophagitis Among Medicaid Enrollees in the Deep South U.S.
    • Prevalence of Eosinophilic Esophagitis in Hispanic Children and Young Adults in South Florida
    • Diagnostic Delay and Misdiagnosis of Non-Esophageal Eosinophilic Gastrointestinal Diseases
    • Effect of Proton Pump Inhibitor Treatment in “PPI Non-Responsive” Patients With Eosinophilic Esophagitis
    • The Eosinophilic Esophagitis Patient With Multiple Atopic Conditions: Clinical Characteristics and Treatment Response to Topical Steroids
    • High Burden of Disease and Associated Costs for Eosinophilic Gastrointestinal Diseases: Results From an Online Patient-Centered Research Network
    • Clinical Features and Treatment Response to Topical Steroids in Ethnic and Racial Minority Patients With Eosinophilic Esophagitis
    • Nationwide Seasonal Variation in Food Impaction in Patients with Eosinophilic Esophagitis\
    • A Real World Study of Cumulative Steroid Burden in Patients With Newly Diagnosed Eosinophilic Esophagitis
    • 10-Year Epidemiological Trends of Eosinophilic Gastritis and Eosinophilic Gastroenteritis
    • Gene Expression and Pathway Analyses Reveal Distinctions Between Eosinophilic Esophagitis Pre and Post Treatment With Glucocorticoids
    • Long-Term Follow-Up of Esophageal Strictures in Eosinophilic Esophagitis Using Structured Esophagram Protocol
    • Markedly Increased Prevalence of Eosinophilic Esophagitis in Patients With Atopic Diseases in a U.S. Veteran Population
    • Clinicopathological Features and Gastric Motor Functions in Patients With Eosinophilic Gastroenteritis: A Retrospective Single Center Audit