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Jen4lern

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1 reviews

Review for Lymphatic Education & Research Network, New York, NY, USA

Rating: 5 stars  

At 6 weeks old, our son was diagnosed with a rare lymphatic disorder called Intestinal Lymphangiectasia. As a result, he has a restricted diet, loses protein through the gut and has lymphedema in the abdomen and lower extremities. There is minimal research and no one had any answers for me in order to help my son. Through extensive searches, I came across LE&RN. Immediately I knew this was the organization that was going to help my son and those like him. Through the 4 plus years we have been involved research has been funded, symposiums are provided for patients and professionals and the diagnosis of lymphedema has been made known. In 2011, my son became the youth ambassador for LE&RN. He has been to Albany twice to advocate for those affected by lymphatic disorders with LE&RN staff standing beside him. Besides funding research and working towards a cure, LE&RN has given my son confidence, hope for a cure and the realization that he is not the only one suffering with lymphatic disorders.

I have watched this organization grow through the years and look forward to the work that is to come. I am proud to have my son as the ambassador and also being involved in the NY state chapter.

Role:  Volunteer