New Coalition Launches during National Eosinophil Awareness Week
(Atlanta, GA)  — To support patients of eosinophil-associated diseases and to advance key issues of importance to this population, patient advocacy groups from around the world have united together to form the Coalition of Eosinophil Patient Advocacy Groups (C-EOS). 
 
The mission of C-EOS is two-fold:
· To encourage, promote, and support scientific research toward improved treatment, medical care, and cures of eosinophil-associated diseases and their complications.
 
· To educate the public, patients, families, policymakers, healthcare professionals, and other stakeholders about eosinophil-associated diseases and resulting problems for these patients, including the need for better diagnostic testing, further research for treatments, and a cure.
Eosinophil-associated diseases occur when levels of eosinophils, a type of white blood cell, are elevated in certain areas of the body. Eosinophils play an important role in the immune system, helping to fight off certain types of infections and parasites. These cells respond to triggers, such as food or airborne allergens, by releasing toxins into the affected area. The diagnosis depends on where the eosinophils cause damage. Subsets include eosinophilic gastrointestinal disorders (esophagus, stomach, or intestines); eosinophilic granulomatosis with polyangiitis, aka Churg-Strauss Syndrome, (lungs, sinuses, heart, and various organ systems); and hypereosinophilic syndrome (blood and organs).
 
Eosinophilic gastrointestinal disorders 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.
 
Due to the lack of information or awareness of these diseases, patients 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.
 
“Eosinophil-associated diseases are chronic, rare diseases that significantly impact quality of life,” said Mary Jo Strobel, Executive Director for the American Partnership for Eosinophilic Disorders, a C-EOS participant. “As an organization dedicated to serving patients and families who live with these diseases, we are thrilled to join C-EOS and are excited to see so many organizations work together in support of patients and researchers who are paving the way to a cure." 
 
C-EOS launches during National Eosinophil Awareness Week, May 18-24. For more information about the coalition and to see other participating organizations, please visit www.c-eos.org.

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

Imagine having a rare disease that causes your esophagus to 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. These diseases aren’t imaginary – eosinophil-associated diseases are real, they are rare, and they are growing in prevalence.

Eosinophil-associated diseases occur when levels of eosinophils, a type of white blood cell, are elevated in certain areas of the body. Eosinophils play an important 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. The diagnosis depends on where the eosinophils cause damage. Subsets include eosinophilic gastrointestinal disorders (affects esophagus, stomach, or intestines); eosinophilic granulomatosis with polyangiitis, aka Churg-Strauss Syndrome, (affects lungs, sinuses, heart, and various organ systems); and hypereosinophilic syndrome (affects blood and organs).

Eosinophilic gastrointestinal disorders 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.

The American Partnership for Eosinophilic Disorders (APFED) will celebrate the 7th annual National Eosinophil Awareness Week May 18- May 24 by uniting patients, families, patient advocacy groups, medical institutions, medical societies, physicians, and companies that support those who have eosinophil-associated diseases in effort to create awareness and educate the public and the medical community about these diseases.

“Eosinophil-associated diseases are rare diseases, but are emerging as a worldwide health care problem,” said APFED Executive Director Mary Jo Strobel. “There is no better time than National Eosinophil Awareness Week for patients, caregivers, organizations, and health care providers to work together in a united effort to raise awareness about what these diseases are and what it is like to live with them.”

Due to the lack of information or awareness of these diseases, patients 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.

“These diseases affect people of all ages and have a significant impact on one’s quality of life,” shares APFED’s President Dr. Wendy Book. “By educating the public and health care providers, we can reduce delays in diagnosis. We are funding critical research that will lead to noninvasive testing and treatments for these diseases.”

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.

Visit apfed.org to learn more about eosinophil-associated diseases and research being conducted, or for a listing of 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

Organizations, Groups, and Healthcare Providers Celebrating National Eosinophil Awareness Week:
Alabama Eosinophilic Disorders Support Group; American Partnership for Eosinophilic Disorders; ausEE (Australia); Central Virginia EOS Support Group; Charlotte Supports EOS; Cincinnati Center for Eosinophilic Disorders/Cincinnati Children’s Hospital Medical Center; Families Affected by Eosinophilic Disorders (UK); Food Allergy & Anaphylaxis Connection Team; Food Allergy Research & Education; Matthew Greenhawt, MD, University of Michigan Food Allergy Center; Greenville Spartanburg Eos Support Group; International Association for Food Protein Enterocolitis; Kids with Food Allergies; Washington DC Area Eosinophilic Connection

3/26/14
Funded study to explore signaling pathway of certain cells in eosinophilic esophagitis
A promising research study that will focus on an innovative approach to define the underlying mechanism of the development of EoE has been awarded anAPFED HOPE Pilot Research Grant award .
Eosinophilic esophagitis (EoE) is a rare disease that is increasing in prevalence. It is characterized by having above normal amounts of eosinophils, a type of white blood cell, in the esophagus lining (the tube connecting the mouth to the stomach), causing inflammation and damage. EoE is a chronic condition and there is no cure.
Joanne Masterson, PhD, of University of Colorado Denver and Children’s Hospital Colorado, was announced as recipient of a $50,000 for her project tilted, “ HIF signaling and mucosal healing in EoE”. Dr. Masterson’s research will provide a greater understanding of the signaling pathway of certain cells involved with EoE as they relate to inflammation caused by oxygen deficiency in cells and tissue. Her research will help determine whether or not this signaling mediates a critical link between conditions that cause inflammation and how the mucosal tissue heals after it is damaged by EoE.
“Dr. Masterson’s research will be a valuable contribution to the research of eosinophil-associated diseases,” said APFED Executive Director Mary Jo Strobel. “Currently, there are no FDA-approved treatments for EoE. Symptoms are controlled through diet and steroids. Gaining a better understanding of the mechanisms that contribute to a cell’s involvement in EoE could lead us to new ways to treat this disease.”
APFED’s competitive research grant program, the Hope on the Horizon Research Fund, is supported entirely by donations and has contributed more than $1.6 million for the 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 which are likely to lead to future external funding.
For more information about eosinophil-associated diseases and the projects that the Hope on the Horizon Research Fund has supported, visit www.apfed.org.
About American Partnership for Eosinophilic Disorders (APFED)
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

3/25/14
Funded study to explore underlying mechanism of the development of eosinophilic esophagitis

A promising research study that will focus on an innovative approach to define the underlying mechanism for the development of eosinophilic esophagitis (EoE) has been awarded a grant through the 2014 Hope APFED/ARTrust™ Pilot Grant Award.

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

Michiko K. Oyoshi, PhD, of Boston Children’s Hospital, was announced as the recipient of the award this month and will receive $140,000 over a two-year period in equal, joint funding between APFED and ARTrust™ for her research proposal entitled, “Mechanisms of Eosinophil Recruitment to Esophagitis Driven by Cutaneous Sensitization.” Dr. Oyoshi’s research will help us to better understand the role of eosinophols and their products, and how these play a part in EOE development. Her research could ultimately lead to new treatments for this increasingly prevalent disease.

The Hope APFED/ARTrust™ Pilot Grant Award, established last year, is the result of a collaborative effort between APFED and the Allergy, Asthma & Immunology Education and Research Organization, Inc. (ARTrust™). The APFED/ARTrust™ Pilot Grant Award was created to enable investigators from a variety of disciplines to initiate projects relevant to eosinophil-associated diseases, with a focus on the development of new ideas which are likely to lead to future external funding and better patient outcomes.

“APFED is excited to partner with ARTrust™ once again this year to advance research on eosinophil-associated diseases,” said APFED Executive Director Mary Jo Strobel. “These diseases are rare, but increasing in prevalence. By working in tandem with ARTrust™, we are better able to encourage researchers to focus their attention on these disorders and make progress toward a cure.”

“Our partnership with APFED is most gratifying,” reported Dr. Dennis Ledford, Chair of the Steering Committee for the ARTrust™. “Together we are identifying the best young investigators and enabling them to answer questions that will help our patients with eosinophilic disorders. The ARTrust™ is excited about this opportunity.”

APFED’s competitive research grant program, the Hope on the Horizon Research Fund, is supported entirely by donations and has contributed more than $1.6 million for the research of eosinophil-associated diseases since the fund began in 2005.

For more information about the Hope APFED/ARTrust™ Pilot Grant Award, or to support APFED’s research efforts, visit www.apfed.org.

For more information about the ARTrust™ or to provide support for the mission of the ARTrust™, visit www.aaaai.org/global/ARTrust.aspx

About American Partnership for Eosinophilic Disorders (APFED)
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

About Allergy, Asthma & Immunology Education and Research Organization (ARTrust™)
The ARTrust™, an independent foundation associated with the American Academy of Allergy Asthma and Immunology, helps sustain and advance the future of allergy, asthma and immunology by supporting education and research initiatives to improve patient care. www.aaaai.org/global/ARTrust.aspx

Previous News

7/5/2013 American Partnership for Eosinophilic Disorders Welcomes New Member to Board of Directors

2/26/2013 Recipient of the 2013 Hope APFED/ARTrust™ Pilot Grant Award Announced

8/27/2012 APFED announces first Executive Director

8/23/2012 APFED and ARTrust™ partner to fund 2013 Hope APFED/ARTrust™ Pilot Grant Award

5/07/2012 The American Partnership for Eosinophilic Disorders has awarded a HOPE Pilot Grant to Kathryn Peterson, M.D.

4/16/2012 Hope Grant Research: Identifying biomarkers to avoid the burden of invasive
procedures

3/21/2012 Anderson Cooper Daytime Talk Show Features Segment on Family Living with an Eosinophilic Disorder

3/11/2012 APFED Announces 2012 Hope Research Grant Recipients

2/26/2012 APFED to Observe Rare Disease Day

12/21/2011 APFED Celebrates its 10 Year Anniversary

12/16/2011 The Traveling Twosome to Raise Funds for APFED with New Book

5/15/2011 APFED Names Ricky Springer as 2011-2012 Education Ambassador

5/17/2011 APFED Awarded Abbey S. Meyer Leadership Award by NORD

5/5/2009 Demi Lavato and Ned Speckor named as 2009-2010 Honorary Ambassadors of
Education

7/17/2008 APFED Announces Approval of ICD9 Codes for Eosinophilic Gastrointestinal
Disorders