Research study aims to better understand mechanisms that increase risk of eosinophilic esophagitis

ATLANTA, GA—The American Partnership for Eosinophilic Disorders (APFED) has announced that its 2016 Hope Pilot Grant Award will fund a promising research study that may create new opportunities in eosinophilic esophagitis (EoE) research by focusing on the fundamental mechanisms of EoE pathogenesis.

Patients with EoE have above-normal numbers of eosinophils (a type of white blood cell) in the lining of the esophagus (the tube connecting the mouth to the stomach), leading to inflammation and damage. There is no cure for EoE, and there are no FDA-approved treatments.

The 2016 HOPE Pilot Research Grant recipient is Leah Kottyan, PhD, of Cincinnati Children’s Hospital Medical Center. Dr. Kottyan will receive $100,000 over a two-year period for her project titled, “Mechanisms of Genetic Risk at 2p23 in Eosinophilic Esophagitis.”

Dr. Kottyan’s project looks to provide a greater understanding of the biochemical mechanisms that drive the expression of a gene known as CAPN14 in patients who have EoE.

Her research seeks to make real progress towards a global understanding of the functional genomic, biochemical, inflammatory, and interactive mechanisms that increase the risk of EoE. Uncovering the fundamental mechanisms of EoE pathogenesis could have broad scientific and clinical implications.

“We are excited to fund Dr. Kottyan’s project. Her work illustrates the new and innovative research being conducted that is critical for improving the lives of individuals with eosinophilic-associated disorders,” said APFED Executive Director Mary Jo Strobel. “Without the incredible generosity of our community and the funds raised for APFED’s research program at events throughout the year, the level of funding we directed to this rigorous research would not have been possible.”

APFED’s competitive research grant program, Hope on the Horizon, is supported entirely by donations and has contributed more than $2.3 million to support research of eosinophil-associated diseases since the fund began in 2005. HOPE Pilot awards allow investigators from a variety of disciplines to initiate new projects relevant to eosinophil-associated diseases, with a focus on the development of new ideas that are likely to lead to future external funding.

About 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

Long-time Advocate Joins Board of Eosinophil-Associated Diseases Nonprofit

ATLANTA, GA—The Board of Directors of the American Partnership for Eosinophilic Disorders (APFED) announces the appointment of new board officer Dawn McCoy. Ms. McCoy will play a key part in donor development, the shaping and implementation of APFED’s strategic initiatives, community relations, and assisting with education and advocacy efforts.

Ms. McCoy has been involved with APFED since 2012, when her son was diagnosed with eosinophilic esophagitis at 18 months old. Since that time, she has been active in the Eos community, co-founding the Central Virginia EOS Support Group, chairing fundraising events to benefit research, and organizing regional educational seminars. She has written a number of articles that illustrate the challenges of living with these diseases, and has provided feedback and assistance to APFED to develop meaningful resources for patients and their families.

Ms. McCoy led efforts in the state of Virginia to have a state proclamation issued in honor of National Eosinophil Awareness Week (recognized each year during the third week of May) and has advocated for a recent legislative measure to require food allergy training in Virginia restaurants.

“I have become deeply involved with APFED over the past few years and continue to be amazed by the work that they do to fund research and provide ongoing support for those who are affected by eosinophilic-associated disease, including my own family,” says Ms. McCoy. “I’m thrilled to join the Board and be part of the crucial behind-the-scenes work required to raise awareness for these conditions.”

Ms. McCoy brings 20 years of experience as a senior-level executive serving in diverse roles in non-profit organizations and government agencies. Currently, she is founder and president of Flourish Leadership Group, a leadership development firm, and resource development coordinator with the Virginia Parent Teachers Association. She is also a nationally-recognized speaker, leadership consultant, and author of two books. In addition, she has published numerous articles on leadership development and organizational development.

In 2014, McCoy was recognized as a finalist for the Family Advocacy Award from Children’s Hospital of Richmond at Virginia Commonwealth University, and in 2015 she was a fellow with the nationally-recognized Partners in Policymaking Program, an advocacy initiative for families with disabilities. That same year, McCoy was honored with APFED’s Elizabeth Allen Award, a prestigious award named for the organization’s founder that recognizes outstanding individuals who have made broad impact in the areas of APFED’s mission points: education, advocacy, research, and support. Recently, she was invited to Washington, DC for Speak Now for Kids Family Advocacy Day sponsored by the Children’s Hospital Association.

“We are excited to welcome Dawn McCoy to our Board of Directors,” said APFED President Dr. Wendy Book. “She is a champion for eosinophil-disease education and passionate advocate for patients and families. Her commitment to further our mission and her endless energy make her a valuable addition to the team as we continue to work on behalf of our patient community.”

About Eosinophil-Associated Diseases
Eosinophil-associated diseases (EADs) occur when eosinophils, a type of white blood cell, cause damage to the body. Eosinophils play a role in the immune system, helping to fight off certain types of infections and parasites. These cells respond to triggers (e.g., food and airborne allergens) by releasing toxins into the affected area.

Eosinophilic gastrointestinal disorders (EGIDs) are distinct diseases affecting the gastrointestinal tract, which render the patient unable to tolerate food proteins. Treatments for these disorders include restricted diets or total food elimination, requiring patients to live off an elemental formula (taken either orally or via a feeding tube), and/or steroid treatments.
Eosinophilic disorders are named for the areas affected by abnormal behavior of these blood cells:

* Eosinophilic Cystitis: Bladder
* Eosinophilic Fasciitis: Connective tissue
Eosinophilic Gastrointestinal Disorders:
* Eosinophilic Colitis (EC): Large intestine
* Eosinophilic Esophagitis (EoE): Esophagus
* Eosinophilic Gastritis (EG): Stomach
* Eosinophilic Gastroenteritis (EGE): Stomach and small intestine
* Eosinophilic Granulomatosis with Polyangiitis (aka Churg-Strauss Syndrome): Blood vessels, various organ systems
* Eosinophilic Pneumonia: Lungs
* Hypereosinophilic Syndrome: Blood and any organs

About APFED
Founded in 2001, 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 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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ATLANTA, GA–The Board of Directors of the American Partnership for Eosinophilic Disorders (APFED), based in Atlanta, GA, announces the election of a new board officer, Denise Mack. Mrs. Mack will serve as the organization’s Director of Research.

Mrs. Mack has extensive experience in research, analysis, and communications. Her college-age son suffers from eosinophilic esophagitis and she understands firsthand the challenges that patients and their caregivers face, particularly when it comes to diagnostic delays, adequate disease management, and the impact the disease has on quality of life.

A former analyst with the U.S. Department of Defense, Mrs. Mack has held a number of volunteer positions during her career, in both leadership and support roles, including experience in eosinophil disease advocacy.

“For well over a decade, APFED has demonstrated an unwavering commitment to serving the needs of our patient community,” noted Mrs. Mack, adding, “I consider it to be a privilege to serve as a patient advocate with this organization and to be able to help shape and implement initiatives which can improve the lives of those living with eosinophil-associated diseases.”

“APFED is honored to have the expertise that Mrs. Mack brings to the board,” said APFED President, Dr. Wendy Book. “She has made significant contributions to eosinophil-disease education and has long advocated for patients on a national level. We look forward to working with her to carry out APFED’s mission and to improve the programs and services we offer.”

Founded in 2001, APFED is a non-profit organization dedicated to patients and their families coping with eosinophil-associated diseases, which occur when eosinophils, a type of white blood cell, cause damage to the body.

Eosinophils play a role in the immune system, helping to fight off certain types of infections and parasites. These cells respond to triggers (e.g., food and airborne allergens) by releasing toxins into the affected area. Eosinophilic disorders are named for the areas affected by abnormal behavior of these blood cells:

Eosinophilic Cystitis: bladder
Eosinophilic Fasciitis: connective tissue
Eosinophilic Gastrointestinal Disorders:
Eosinophilic Colitis (EC): large intestine
Eosinophilic Esophagitis (EoE): esophagus
Eosinophilic Gastritis (EG): stomach
Eosinophilic Gastroenteritis (EGE): stomach and small intestine
Eosinophilic Granulomatosis with Polyangiitis, aka Churg-Strauss Syndrome: blood vessels, various organ systems
Eosinophilic Pneumonia: lungs
Hypereosinophilic Syndrome: blood and any organ

Eosinophilic gastrointestinal disorders are distinct diseases affecting the gastrointestinal tract, which render the patient unable to tolerate food proteins. Treatments for these disorders include restricted diets or total food elimination, requiring patients to live off an elemental formula (taken either orally or via a feeding tube), and/or steroid treatments.

“It is a pleasure to welcome Denise Mack to APFED’s Board of Directors,” said APFED Executive Director, Mary Jo Strobel. “The passion she brings to patient advocacy, coupled with her drive to facilitate research advances is truly an asset to not only our organization, but our entire disease community as a whole. We are excited to have her guidance and leadership as APFED continues to grow and expand.”

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

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About 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