All posts by Mary Jo Strobel

Annual Conference July 8-9

APFED’s 14th Annual Patient Education Conference on
Eosinophilic Gastrointestinal Disorders

Sheraton San Diego Hotel & Marina
San Diego, CA
July 8-9, 2016

Online registration is open!

To connect in advance with the families who are planning to attend the conference, be sure to join our conference Facebook group!

Twitter: #EosConnection

» Interested in sharing the conference announcement with your patients? Download flier.

» Interested in becoming an Education Partner for this event? Email mjstrobel@apfed.org.

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APFED would like to thank our Education Partners for making the 2016 Eos Connection Conference possible:

Presenting Level Partner
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Gold Level Partner
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Supporting Level Partners

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Conference Program

American Partnership for Eosinophilic Disorders Welcomes New Member to Board of Directors

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

Life-threatening food allergies increasing in children

BOSTON —It’s lunchtime for 8-year-old Cameron Ledin.

On the menu today, and everyday, is a specially designed formula he takes in through a feeding tube. Hypoallergenic and made of amino-acids, it’s just bare-bones nutrition and all his body can take.

Each bag of formula has 400 calories in all, and he’s fed one bag four times a day.

“He was having issues with abdominal pain. He was getting full early. He wasn’t gaining weight well,” said Dr. John Lee, an allergist at Children’s Hospital Boston.

“People in our school weigh 50 or 51 pounds, and I’m like the only one who weighs 40 pounds,” said Cameron.

Last summer, Children’s Hospital Boston finally put a name to what Cameron’s endured since he was a baby: Eosinophilic esophagitis, or EoE. It’s a disease where his white blood cells attack food, damaging his esophagus.

“It’s almost like his body’s decided food’s a parasite and starts building up and closing off the throat,” said Kim Ledin, Cameron’s mother.

The disease is rare, but alarmingly, is on the rise.

“In the last 10 years or so, there’s actually been probably a seven- to 10-fold increase in the prevalence of EoE,” said Lee.

Doctors aren’t sure why. One of the most popular theories is the hygiene hypothesis.

“Our society is so clean that we have no bacteria. We have no infections. Our immune system doesn’t have anything to fight. So instead of fighting things that it should be fighting, it’s fighting food,” Dr. Perdita Permaul, who specializes in children’s food allergies at Massachusetts General Hospital’s Food Allergy Center.

“They’ve done studies looking at farm kids that grew up in Europe. They live on the farm. They’re exposed to dirt. They’re exposed to farm animals. They have little to no food allergies,” Permaul said.

In the United States, Cameron’s one of a growing number of American children with food allergies. One in 12 kids under age 6 have allergies, and at Children’s Hospital Boston, emergency room visits for allergic reactions more than doubled from 2001 to 2006, according to the Journal of Allergy and Clinical Immunology.

“Food allergies, asthma, all types of allergic disorders are increasing,” said Lee.

For Cameron, that’s meant pain and frequent hospital trips.

“Day after day after day nausea, vomiting, not tolerating food, not wanting to eat food,” said Todd Ledin, Cameron’s father.

“Joint pain, headaches, rashes,” said Kim Ledin.

And at school, kids can be cruel.

“My meatloaf sub, they thought looked like a brain,” said Cameron. “(It tasted good), but it stopped me from eating it because it really hurt my feelings.”

There’s no cure for EoE. But since he’s been on formula, Cameron’s put on three pounds in three weeks.

“My son’s had no pain for the first three weeks in his entire life, and that’s pretty awesome,” said Kim Ledin.

The next step is slowly reintroducing foods back into Cameron’s diet, one at a time, now that his esophagus is in better shape.

“Banana chips, potatoes, sweet potatoes, a lot of stuff,” said Cameron.

The Ledin’s advice for other parents is simple.

“Sometimes it’s not just allergies. It might be something if there are (gastrointestinal) problems. Push your doctor into taking the next step,” said Todd Ledin.

Source: WCVB.com

Recipient Announced for the 2015 Hope APFED/ARTrust™ Pilot Grant Award

Funded study to examine genetic variations in the development of eosinophilic esophagitis

ATLANTA, GA—A 2015 Hope APFED/ARTrust™ Pilot Grant Award has been given to a promising research study that will focus on the mechanisms behind the development of eosinophilic esophagitis (EoE) and investigate the age-related differences between EoE in children and adults.

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.

At the annual meeting of the American Academy of Allergy, Asthma & Immunology held Feb. 19-24 in Houston, TX, Antonella Cianferoni, MD, PhD, of Children’s Hospital of Philadelphia and the University of Pennsylvania, was announced as the recipient of a two-year $140,000 grant for her project titled “Genotype Phenotype Correlation in Eosinophilic Esophagitis,” to be funded equally between APFED and ARTrust™.

Dr. Cianferoni’s research will help us better understand genetic variations in the development of EoE, and the important role that thymic stromal lymphopoietin (TSLP), a protein that promotes allergic inflammation, plays in the process. Her research could potentially lead to a better understanding of the relationship between TSLP and two other regulator proteins (EMSY and CAPN14).

“This award will allow me to focus my research on understanding which role genetic variations play in each individual patient, potentially making it easier in the future to predict the best therapy to use in a single patient based on his/her own genetic makeup,” said Dr. Cianferoni. “This grant will also make it possible to gather more preliminary data to apply for a NIH grant and continue future research.”

Dr. Cianferoni was also the recipient of an APFED HOPE Grant for up-and-coming researchers in 2009. Her work to help us better understand how EoE develops speaks to both her talent as a clinician-investigator and the relevance of her proposed studies to the mission of APFED, ARTrust™, and the Hope Grant program.

Established in 2013, the Hope APFED/ARTrust™ Pilot Grant Award is the result of a collaborative effort between APFED and the Allergy, Asthma & Immunology Education and Research Organization, Inc. (ARTrust™) to enable investigators from a variety of disciplines to initiate projects relevant to eosinophil-associated diseases, with a focus on the development of new and inventive ideas that are likely to lead to future external funding and better patient outcomes.

“Supporting research efforts is one of the pillars of APFED’s mission,” said APFED Executive Director Mary Jo Strobel. “This pilot grant study is the type of project that will help us to better understand the relationship that specific proteins have with one another when eosinophilic esophagitis is present and how these proteins may affect the disease process. We are thrilled that our partnership with ARTrust™ continues to advance research and make progress toward a cure.”

“The AAAAI, through the ARTrust, has prioritized the funding of young investigators through a variety of mechanisms including its interactions and support of patient advocacy groups such as the American Partnership for Eosinophilic Disorders. The AAAAI applauds Dr. Cianferoni for her continued outstanding research efforts and is proud to help contribute to her future success in defining the pathophysiology and potential treatment for complex disorders involving eosinophils,” said AAAAI President Robert F. Lemanske, Jr., MD, FAAAAI.

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.

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

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..

2015 Hope Pilot Grant Award Recipient Announced

Funded study to offer molecular insights into eosinophilic esophagitis

ATLANTA, GA—A 2015 Hope Pilot Grant Award will fund a promising research study that may create new opportunities in eosinophilic esophagitis (EoE) research by focusing on the molecular aspects of the condition.

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.

Ting Wen, PhD, of Cincinnati Children’s Hospital Medical Center, will receive $100,000 of funding over a two-year period for his project titled, “Defining Esophageal Lymphocyte Phenotype and Function in Eosinophilic Esophagitis.”

Dr. Wen’s research will look at tissue-residing intraepithelial lymphocytes (IELs), which are cells that operate as a first line of immunological defense in the mucosal barrier in the human gastrointestinal system. This research will test the hypothesis that the presence of T helper type 2 (Th2) cytokine–producing IELs drives eosinophil tissue homing at the cellular level. The study may also suggest whether adaptive immune recognition by IELs may be a common mechanism in eosinophil-associated diseases.

“We look forward to Dr. Wen’s contribution to the research of eosinophil-associated diseases,” said APFED Executive Director Mary Jo Strobel. “By examining the cellular and molecular mechanisms that underlie EoE, we hope to gain a deeper understanding and open the door to new ways of treating 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 that are likely to lead to future external funding.