Larchmont family travels to D.C. to discuss rare disease with legislators

Larchmont resident Bonnie Weinbach and her son Aaron traveled to Washington D.C. last week to meet with legislators, including Rep. Nita Lowey (D-NY); and the staff of Sen. Chuck Schumer (D-NY), Sen. Kirsten Gillibrand, and Rep. Eliot Engel (D-NY).

Weinbach united with other families living with eosinophil associated diseases for Capitol Hill Day during National Eosinophil Awareness Week. Their mission: to educate legislators about the challenges of living with these diseases and the need for federal funding for research.

Nita
Pictured: Julia Weinbach, Bonnie Weinbach, Nita Lowey (D-NY 17th District), Aaron Weinbach

Photographed by Alan Rubin
Eosinophil associated diseases are characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places in the digestive system, tissues and/or organs, which causes inflammation and damage.

After years of suffering, Aaron Weinbach, age 8, was finally diagnosed with eosinophilic esophagitis (EoE), a disease that affects his esophagus (the tube connecting the mouth to the stomach). As a result, Aaron’s ability to eat is impacted.

Eosinophil associated diseases, particularly EoE, are rapidly emerging as a healthcare problem worldwide. All too often patients aren’t given an accurate diagnosis for years, or are misdiagnosed, due to the lack of information or awareness of these diseases.

Diagnosis can be made only through tissue biopsies, an invasive procedure that requires anesthesia. These diseases are chronic and often debilitating. Currently, there is no FDA-approved therapy for most eosinophil associated diseases and there is no cure.

Ms. Weinbach has hope that the meetings will lead to changes for her son and others living with eosinophil associated diseases. “I hope to see federal funding for research into better treatments, less invasive testing to diagnose and monitor these diseases and hopefully, one day, a cure,” she said.

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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 strives to expand education, create awareness, and support research while promoting advocacy among its members. www.apfed.org

– Swapna Venugopal (source: lohudblogs.com)