All posts by Amity Westcott-Chavez

2019 NASPGHAN Outstanding EGID Abstract Award Recipients Announced

APFED Blog, Press Releases, What's New

Award recognizes two best-scoring abstracts focused on eosinophilic gastrointestinal disease

(Atlanta, GA)— The American Partnership for Eosinophilic Disorders (APFED) has announced the two recipients of the 2019 NASPGHAN Outstanding EGID Abstract Awards. The awards were presented at the annual meeting of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) held in Chicago. NASPGHAN is the professional society for pediatric gastroenterologists in North America, serving clinical gastroenterologists and scientists from the U.S., Canada and Mexico.

The NASPGHAN Outstanding EGID Abstract Awards recognize the best-scoring abstracts on eosinophil-associated gastrointestinal diseases (EGIDs) and the funds help offset travel costs to attend the meeting and present their finding to their peers.

The 2019 NASPGHAN Outstanding EGID Abstract Award recipients are Dr. Kelly Whelan of Fels Institute for Cancer Research & Molecular Biology at Temple University in Philadelphia, PA, for her abstract titled, “Interleukin-13-Mediated Release of Mitochondrial DNA From Esophageal Epithelial Cells: A Novel Noninvasive Biomarker for Eosinophilic Esophagitis,” and Dr. Anna Henderson of Cincinnati Children’s Hospital for her abstract titled, “Monitoring Eosinophilic Esophagitis Disease Activity with Blood Eosinophil Progenitor Levels.”

Dr. Whelan’s team set out to evaluate mitochondrial content in esophageal biopsies and circulating mitochondrial DNA in serum in people with active eosinophilic esophagitis (EoE) and in those who did have EoE (normal pathology). This was to help determine the significance of mitochondria in EoE pathobiology and disease management. The results of this research showed increased mitochondria in esophageal epithelium of active EoE patients. These findings demonstrate that EoE features increased mitochondria in esophageal epithelium and peripheral circulation. While more research is needed, measuring mitochondrial DNA may serve as a non-invasive biomarker for EoE.

Dr. Henderson’s team aimed to determine whether eosinophil progenitors in the blood could be used as a biomarker to identify pediatric patients with active EoE. In a prospective observational pilot study, peripheral blood samples, symptom history, and laboratory data were collected from pediatric patients undergoing endoscopy for evaluation of EoE on dietary therapy at Cincinnati Children’s Hospital Medical Center. Their findings suggest that blood eosinophil progenitors levels may be used as a biomarker to detect active EoE disease in patients undergoing food trials and potentially reduce the need for repeated endoscopies. More research is needed to investigate the effects of antihistamines and swallowed steroids on eosinophil progenitors levels in the blood, as well as longitudinal studies to assess the ongoing performance of this potential biomarker.

Dr. Anna Henderson with Dr. Ben Gold, President Elect of NASPGHAN
Dr. Kelly Whelan with her abstract

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. www.apfed.org

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Steven Page Trio Headlines NYC Benefit Concert for APFED on 11/7

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

“Charit-EoE Concert for a Cure for Eosino…what???” will help fund research for eosinophil-associated diseases

(Atlanta, GA)— The Steven Page Trio is set to perform at a special benefit concert on Thursday, November 7 at TGA NYC in New York City, with doors opening at 7:00 p.m.  Steven Page is a founding member of the popular rock sensation Barenaked Ladies and a 2018 Inductee to the Canadian Rock & Roll Hall of Fame.

Arlene and Lance Steinberg are chairing this evening of music and fundraising to benefit APFED’s HOPE on the Horizon Research Program. The Steinbergs have a son who has been diagnosed with eosinophilic esophagitis (EoE), a chronic allergic condition of the esophagus that is believed to be triggered by allergies to food. The condition can range from mild to severe symptoms, and left untreated, can cause the esophagus to stiffen and narrow, causing difficulty swallowing.

Tickets to the benefit concert may be purchased here for a cost of $150 per person. The ticket price includes three hours of cocktails, light fare, a gift bag filled with a variety of items from generous sponsors, and an unforgettable evening of music, community, awareness, and fun.

Proceeds from the concert will benefit APFED’s HOPE on the Horizon Research Program, which awards grants to investigators who initiate new projects relevant to eosinophilic esophagitis (EoE) and other eosinophil-associated diseases.

“I met with the Steinberg family in 2016. Before then, I knew nothing about eosinophil-associated diseases,” shared Steven Page.  “I learned very quickly how devastating they can be. I also learned how tightly knit the community of families who are living with these disorders are, and I am honored to be able to support them with music.”

“We saw a need to bring back our event for a third year, and we are delighted that Steven Page and his trio will be headlining,” said Arlene Steinberg. “We’re thankful to the Steven Page Trio for sharing an amazing night of music with this community and for the community’s continued support of APFED and its groundbreaking research program.”

“Over the years, we’ve truly valued this unique concert experience that the Steinbergs have hosted to benefit APFED’s research program. Our entire community is grateful for how their efforts have advanced our understanding of these rare diseases,“ added APFED Executive Director Mary Jo Strobel. “This event truly creates hope through the new projects that it makes possible.”

APFED appreciates the support of the following Double Platinum sponsors: Brandt, Steinberg, Lewis & Blond LLP; Sunshine Charitable Foundation; Tito’s Handmade Vodka; and TGA NYC.

About American Partnership for Eosinophilic Disorders (APFED)

American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s 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. www.apfed.org

 About Eosinophilic Esophagitis (EoE)

Eosinophilic esophagitis (EoE) is a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). It occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus and persists despite acid-blocking medicine. The elevated number of eosinophils cause injury and inflammation to the esophagus. This damage may make eating difficult or uncomfortable, potentially resulting in poor growth, chronic pain, and/or difficulty swallowing.

EoE is a subset of a group of rare, chronic conditions known as eosinophil-associated diseases. When a person has elevated numbers of eosinophils in their digestive system, tissues, organs, and/or bloodstream, without a known cause, he or she may have an eosinophil-associated disease. Due to the lack of information or awareness of these diseases, patients may suffer for years trying to obtain an accurate diagnosis and appropriate treatment.  Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. There is no cure and no FDA-approved treatments.

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Supporting Students with Eosinophil-Associated Disease at School

APFED Blog, Press Releases, What's New

APFED’s efforts focus on creating a supportive and safe environment for students affected by chronic eosinophilic disorders

(Atlanta, GA)— The American Partnership for Eosinophilic Disorders (APFED), a non-profit advocacy organization established in 2001, offers a wealth of free resources and tools online to support children with eosinophilic-associated diseases in a school environment.

Eosinophils are a type of white blood cell that plays a role in fighting off certain infections and in allergic reactions and inflammatory processes. When a person has too many eosinophils without a known cause, he/she may have an eosinophil-associated disease.

These chronic and sometimes debilitating conditions are further characterized by the areas of the body in which the eosinophils have accumulated. The most common of these diseases are eosinophilic gastrointestinal disorders (EGIDs), which affect the esophagus, stomach, and/or intestines.

It is not known what causes EGID, but food and environmental allergies may play a role.  Therefore, students with EGID may need to follow special diets, and in some cases, these diets may be severely restricted. In some cases, a special formula, sometimes delivered via a feeding tube, may be required to ensure adequate nutrition.

“The school setting can be stressful for students who have an eosinophil-associated disease,” said APFED Executive Director Mary Jo Strobel. “In addition to adhering to challenging dietary restrictions that might be prescribed as treatment, students may feel symptomatic, such as feeling nauseous or fatigued, and may miss many school days as a result. This in turn can underscore feelings of anxiety, isolation, and depression.”

APFED’s school resources are designed specifically to empower students, families, educators, and school staff to better plan for EGID management in the school setting.

Available freely to the public on apfed.org, the resources include information about Section 504 and Individual Education Plans (IEP), as well as templates, forms, and sample accommodations that could be considered for students with EGID.  The website also offers recorded webinars and video interviews with a variety of experts about managing EGID and school.

“As more cases of EGID are diagnosed, the need for education rises,” says Strobel. “Our newest resource includes a classroom-friendly information sheet that explains EGIDs to the students and teaches them how they can help a friend or classmate who has this condition.”

To learn more about eosinophil-associated disease and to access free school resources, visit apfed.org.

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About Eosinophil-associated Diseases

Eosinophils (“ee-oh-sin-oh-fills”) are a type of white blood cell that helps our immune systems fight off infections and parasites. They also play a role in allergic reactions and inflammatory processes.

When a person has symptoms and an elevated number of eosinophils in their tissues, organs, and/or bloodstream, without a known cause, he/she may have an eosinophil-associated disease. These conditions are further characterized by the areas of the body in which the eosinophils have accumulated.

A few examples include the esophagus (eosinophilic esophagitis), stomach (eosinophilic gastritis), or the lungs (eosinophilic asthma).

Symptoms of eosinophil disease may vary depending on the area of the body affected, and by age. Patients often embark on a long, frustrating journey seeing many different specialists before a diagnosis is made. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. Most subsets of eosinophil-associated disease do not yet have an FDA-approved pharmaceutical indicated for treatment.

 

About American Partnership for Eosinophilic Disorders (APFED)

The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s mission is to embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. www.apfed.org

APFED Invites Scientific Community to Apply for Research Grant Funding

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

Community Donations to APFED Will Fund New Research of Eosinophil-associated Diseases

 (Atlanta, GA)— The American Partnership for Eosinophilic Disorders (APFED), a non-profit advocacy organization established in 2001, is inviting scientific investigators to submit research proposals for funding consideration.

The 2020 APFED HOPE Grant was established to foster the development of new projects relevant to eosinophil-associated diseases. Investigators from a variety of disciplines are encouraged to apply. Successful applicants will focus on the development of new ideas which are likely to lead to future external funding.

Eosinophils (pronounced “ee-oh-sin-oh-fills”) are a type of white blood cell that helps our immune systems fight off infections and parasites. They also play a role in allergic reactions and inflammatory processes.

When a person has symptoms and an elevated numbers of eosinophils in their tissues, organs, and/or bloodstream, without a known cause, he or she may have an eosinophil-associated disease.

These conditions are further characterized by the areas of the body in which the eosinophils have accumulated. A few examples include the esophagus (eosinophilic esophagitis), stomach (eosinophilic gastritis), or the lungs (eosinophilic asthma).

Symptoms of eosinophil disease may vary depending on the area of the body affected, and by age. Patients often embark on a long, frustrating journey seeing many different specialists before a diagnosis is made. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. Most subsets of eosinophil-associated disease do not yet have an FDA-approved pharmaceutical indicated for treatment.

“APFED’s HOPE on the Horizon Research Program is funded entirely by community donations,” said APFED Executive Director Mary Jo Strobel. “We are appreciative of the generous gifts that have enabled us fund research grants. To ensure donations have as much impact as possible, APFED employs a peer-review process that is both rigorous and fair. This process guides the selection of the proposal that is likely to have the biggest impact for patients who suffer from eosinophil-associated diseases.”

APFED’s HOPE Grant will award up to $50,000 over a two-year grant term. The deadline to submit a Letter of Intent to APFED is October 24, 2019, and applications are due November 21, 2019. The awards will be made in the spring.

For complete details, terms, application requirements, and to submit a proposal, please visit https://apfed.org/research/grant-application-for-researchers/.

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About American Partnership for Eosinophilic Disorders (APFED)

The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s mission is to embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. www.apfed.org

 

Shelly Parks Recognized with 2019 Elizabeth Allen Award

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Each year, APFED’s volunteer Board of Directors honors an APFED member who has shown a deep commitment to our mission and made significant contributions in the areas of research, education, advocacy, and awareness. APFED is pleased to present the 2019 Elizabeth Allen Award to Shelly Parks (pictured above with her mother and fiancé).

This award, named for one of APFED’s founders, recognizes an outstanding community member who goes above and beyond to make broad impact in the areas of APFED’s mission points of education, awareness, advocacy and research.

In 2016, Shelly Parks began her battle with hypereosinophilic syndrome (HES). Before becoming ill, she graduated with her second master’s degree at the age of 26, was a CrossFit competitor, and enjoyed life with her fiancé and their dog. Since her diagnosis, Shelly has dedicated her time and efforts to support patients with eosinophil-associated disease.

Shelly works to raise awareness and educate others about these conditions, both on local and national levels. This spring, she joined APFED at Medical Nutrition Hill Day in Washington, DC to share her story with legislators and seek support of the Medical Nutrition Equity Act, which is federal legislation that would provide insurance coverage of medical foods when prescribed to treat certain medical conditions.

She has also shared her perspective to inform stakeholders about meaningful therapies for HES patients, and most recently joined us as a panelist  at APFED’s 2019 Eos Connection Patient Education Conference, sharing her journey with HES.

In addition, Shelly has organized successful community fundraisers to support critical research needs in the hopes of finding a cure.

Please join us as we honor and celebrate Shelly’s contributions to our community. We are thankful for her generous spirit, her dedication to advancing education and treatments for HES, and the inspiration she offers to patients living with eosinophil-associated diseases!