Contact: Mary Jo Strobel, Executive Director, (713) 493-7749, mjstrobel@apfed.org

Eosinophil-associated disease (EAD) community unites for action and awareness

(Atlanta, GA)— During the week of May 20-26, 2018, the American Partnership for Eosinophilic Disorders (APFED) is honoring the 11th Annual National Eosinophil Awareness Week (NEAW). NEAW was established in 2007 by APFED, a nonprofit advocacy organization, to support those who have eosinophil-associated diseases (EADs) and raise the level of education and awareness in the public and the medical community about these conditions.

Eosinophils (ee-oh-sin-oh-fil) are a type of white blood cell that play an important part of our immune system, helping us to fight off certain types of infections, such as parasites. Many different problems can cause high numbers of eosinophils in the blood including allergies (food and environmental), certain infections caused by parasites, and other problems. 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.

The most common of these diseases are eosinophilic gastrointestinal disorders (EGIDS), which affect the gastrointestinal tract and symptoms are often triggered by food. 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.

In honor of National Eosinophil Awareness Week, members of the eosinophil patient community are joining APFED as we inspire, educate, and remind patients and families that they are not alone.

How You Can Help Us

•    Change your profile photo on Facebook to our new awareness frame. Follow this link and use the search box to find “NEAW Frame 2018.”
•    Share facts about eosinophil-associated diseases on your social media pages using the hashtag #NEAW18
•    Start a Facebook fundraiser to benefit APFED’s Hope on the Horizon Research Fund and ask friends and family to support you
•    Download and share our new “I love someone with…” social media graphics; we have ten different subsets of eosinophil-associated disease available for you to highlight
•    Join the National Eosinophil Awareness Week community on Facebook and write a post to share what you are doing
•    Create your own NEAW event at your home, school, or workplace to inform your community
•    Donate to APFED to help support our education, advocacy, support and research initiatives, or organize a local fundraiser; APFED can help!

“The more people who know about eosinophil-associated diseases, the stronger our community becomes and the more we are heard,” said APFED’s Executive Director Mary Jo Strobel. “When we share our stories and educate the broader community, we move everything forward and increase momentum. Increased awareness can lead to faster and better patient care, and it can boost funding for research that will lead us to better diagnostics and treatments.”

Due to the lack of awareness of these diseases, patients may suffer for years without 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 there are no FDA-approved treatments for many subsets of eosinophil-associated disease.

“It’s through campaigns like NEAW that people who are unfamiliar with these diseases can learn more about them,” said APFED’s President Dr. Wendy Book. “This week mobilizes healthcare providers, researchers, and those living with these diseases to create one powerful, collective voice as we advocate on the issues that matter most to this community, from insurance coverage for medical foods to non-invasive treatment and testing options and much more.”

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 disseminate educational material to health care providers and to the public.

Visit apfed.org to learn more about eosinophil-associated diseases and the ways our community is celebrating NEAW,  about current research efforts, and about community events that are taking place during this special 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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Contact: Mary Jo Strobel, Executive Director, (713) 493-7749, mjstrobel@apfed.org

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, Juliet Ross, Psy.D.Dr. Ross will play a key role in the organization’s development, shaping and implementing APFED’s strategic initiatives and supporting a variety of campaigns that align with the organization’s mission.

A clinical psychologist in private practice in New York, Dr. Ross has been involved with APFED since 2012 when her young son was diagnosed with eosinophilic esophagitis (EoE). Since that time, she has been active in the patient community, working through many channels to raise awareness of eosinophil-associated diseases.  A staunch advocate, Dr. Ross has shared the caregiver’s perspective through various outlets, including national press interviews, and has helped countless families as they learn to cope with these diseases. She has supported efforts for insurance coverage of medical foods and speaks out about improved access to care for families who need it. Dr. Ross has also made significant contributions to research funding, raising tens of thousands of dollars in support of APFED’s HOPE on the Horizon Research Program.

“I am enthusiastic about ramping up my efforts to raise awareness about eosinophil-associated diseases and funds that are desperately needed for research and advocacy,” said Dr. Ross. “Improving quality of life for patients and families affected by EADs is near and dear to me, and I look forward to pursuing these goals as a member of the APFED Board. The day my son was diagnosed with EoE, our doctor provided information from APFED, and APFED has been with us every step of the way. It is a privilege to be part of APFED’s initiatives.”

“We are thrilled to welcome Juliet Ross to our Board of Directors,” said APFED President Dr. Wendy Book. “She has championed our cause for many years and has made many important contributions in the areas of awareness, education, research, and advocacy. Her passion, dedication, and commitment to further APFED’s mission will better enable us to continue our critical work on behalf of the patient community.”

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 that have various functions in the body and are involved with a number of inflammatory conditions. Typically, eosinophils make up less than 5% of circulating white blood cells. When a person has increased 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. These diseases are further categorized depending on where the eosinophils are found (for example, eosinophilic esophagitis is when there are too many eosinophils in the esophagus, which in turn cause inflammation and damage). There is no cure for eosinophil-associated diseases, and very few subsets have an FDA-approved therapy available. 

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

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.

Upcoming events include National Eosinophil Awareness Week, May 20-26, 2018, and Eos Connection 2018: APFED’s 16 Annual Patient Education Conference, July 6-7, 2018 in Denver. Learn more at apfed.org.

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Funded study to define the consequences and mechanisms of mucosal mast cell activation in the esophagus

Contacts: Mary Jo Strobel, Executive Director, (713) 493-7749, mjstrobel@apfed.org

ATLANTA, GA —The American Partnership for Eosinophilic Disorders (APFED) is pleased to announce that it has awarded a 2018 HOPE Pilot Grant Award to Dr. Joshua B. Wechsler, Assistant Professor in Pediatrics, Northwestern University Feinberg School of Medicine, and Attending Physician, Ann & Robert H. Lurie Children’s Hospital of Chicago.

Dr. Wechsler will receive $100,000 from APFED over a two-year period to carry out his award-winning research proposal. His project is entitled “Defining Mast Cell Phenotype, Activation Pathways and Cellular Interactions that Drive Chronic Symptoms and Endoscopic Changes in Eosinophilic Esophagitis.”

With this grant, Dr. Wechsler seeks to understand the role of esophageal mast cell activation in EoE symptoms, along with endoscopic abnormalities in EoE and the effect of treatment. His work will analyze novel pathways in individual mast cells from a biopsy, to determine factors that drive persistent endoscopic abnormalities. He will also define interactions of mast cells and their mediators with the structural epithelial cell, relevant to what is seen in the biopsy.

This project will help uncover fundamental aspects of mucosal mast cells signaling and cellular interactions critical to driving clinical phenotype in EoE, which could in turn contribute to novel therapies to improve treatment response.

“APFED’s HOPE Pilot grants are selected through a competitive peer-reviewed process,” APFED President Dr. Wendy Book explains. “Applicants are asked to submit a novel research idea that shows promise and conforms to the APFED mission to improve the lives of those living with eosinophil-associated diseases. These proposals are then reviewed and scored by an ad-hoc panels of expert reviewers, which guides us as we select the most impactful projects with innovative ideas to fund. Successful grantees demonstrate a plan and the potential to receive subsequent, larger funding for their project.”

“This work seeks to improve patient care by delving into critical pathways at play between individual mucosal mast cells and the epithelium,” said Dr. Wechsler. “We believe these interactions are key to ongoing endoscopic and histologic abnormalities in a subset of patients with EoE. This award will greatly facilitate the success of my research career and help me achieve extramural funding.”

 To learn more about APFED’s HOPE on the Horizon Research Program and projects that have been awarded since the program’s inception in 2005, please visit apfed.org.

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.

Upcoming events include National Eosinophil Awareness Week, May 20-26, 2018, and Eos Connection 2018: APFED’s 16 Annual Patient Education Conference, July 6-7, 2018 in Denver. Learn more at apfed.org.

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