(Atlanta, GA)— This week, the American Partnership for Eosinophilic Disorders (APFED) celebrates the 9th Annual National Eosinophil Awareness Week. National Eosinophil Awareness Week was established in 2007 by APFED, a patient and family advocacy and education organization, to support those who have eosinophil-associated diseases (EADs) and to raise the level of education and awareness in the public and the medical community about these conditions.

Eosinophil-associated diseases are real, they are rare, and they are growing in prevalence. We observe National Eosinophil Awareness Week acknowledging those who live every day with the concern that their exposure to certain triggers (e.g., food and airborne allergens) may have the potential to cause a reaction.

Imagine having a rare disease that makes your esophagus swell and narrow, preventing you from eating any food. Or one that causes inflammation and damage to your skin, lungs, heart, or nervous system. Imagine having a disease that causes bone pain, muscle pain, and thickened, puckered skin and not being able to find a doctor who is able to help.

Eosinophils (ee-oh-sin-oh-fil) are a type of white blood cell and an important part of the immune system as they help fight off certain types of infections and parasites. 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. With an EAD, cells respond to triggers by releasing toxins into the affected area.

The most common of these diseases are eosinophilic gastrointestinal disorders (EGIDS) that affect the gastrointestinal tract and often render the patient unable to tolerate certain 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.

“Communities across the U.S. are affected by eosinophil-associated diseases,” said APFED Executive Director Mary Jo Strobel. “During National Eosinophil Awareness Week, we are pushing to ensure that every family affected by these conditions has access to the care, support and resources that they need. This event compels the research community, health care providers, caregivers, and people living with EADs to join together to heighten awareness and address the issues that this community faces.”

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.

“Research and education are two of the best tools to help people living with these disorders,” shares APFED’s President Dr. Wendy Book. “Educating the public and the medical community can reduce delays in diagnosis. Further, we are funding crucial research to better understand EADs, which we hope will lead to noninvasive testing and treatments.”

Organizations, healthcare providers, and institutions around the globe are joining APFED to recognize National Eosinophil Awareness Week by sharing information with their communities and with the public. Nutricia, the makers of Neocate®, a line of amino acid-based products, has partnered with APFED for its celebration of this special week by providing the means for the organization to distribute educational packets to health care providers and awareness materials to the public.

Organizations, Groups, and Healthcare Providers Joining APFED in Celebrating National Eosinophil Awareness Week:  Alabama Eosinophilic Disorders Support Group; Allergy & Asthma Physicians; American Partnership for Eosinophilic Disorders; ausEE (Australia); Cincinnati Center for Eosinophilic Disorders; CURED Foundation; Families Affected by Eosinophilic Disorders (UK); Food Allergy & Anaphylaxis Connection Team; Food Allergy Research & Education; Greenville Spartanburg Eos Support Group; Kids with Food Allergies (KFA); Texas Children’s Hospital Eosinophilic Gastrointestinal Disease Program; Utah Food Allergy Network Division of Eosinophilic Support. Learn more about what our partners are doing to recognize NEAW 2016.

Visit www.apfed.org to learn more about eosinophil-associated diseases, current research efforts, and community events that are taking place during National Eosinophil Awareness Week.

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

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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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