EGL Genetics Blog

The LHON Genealogy Project

Posted by Danyella Davis on May 10, 2017 3:15:00 PM

As a 11778G>A mutation carrier, Lissa Poincenot, founder of LHON.org, is forever connected to the Leber hereditary optic neuropathy (LHON) community.

After her son’s diagnosis in 2008, this mother turned advocate was determined to provide resources, tools, and easily accessible information to carriers and those diagnosed with LHON.

In her continued quest to find a cure by connecting research and LHON patients, Poincenot recognized a void.

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Topics: Inherited Eye Disorders, LHON, Global Genes Rare Patient Impact Grant, Leber hereditary optic neuropathy, eye disease, optic atrophy

World Renowned LHON Expert Discusses Clinical Trial

Posted by Danyella Davis on May 26, 2016 11:00:00 AM

Dr. Nancy Newman of the Emory University School of Medicine talks passionately about her expertise

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Topics: LHON, Emory University School of Medicine, clinical trial, healthy vision month

Mother Turned Advocate After Son’s LHON Diagnosis

Posted by Danyella Davis on May 12, 2016 9:00:00 AM

How does a 19-year-old college sophomore go from 20/20 vision to legally blind in 2 months?

 Jeremy Poincenot, a San Diego State University student, received a shocking, life altering diagnosis just months after expressing concern of blurred vision. A diagnosis that set his mother, Lissa Poincenot, on a path of advocacy to connect patients to thought leaders and supply resources and support.

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Topics: Inherited Eye Disorders, LHON

 

 

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