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Who We Are

Board & Staff

Tara Voogel

Tara was born in British Guiana. She is the fourth of seven siblings, five of whom developed GNE Myopathy, She watched as her siblings became disabled, and she became the fourth to develop the disease. It took four decades to get a correct diagnosis, which she received in 2010. Before becoming symptomatic, she completed her teacher’s training and later received a degree in clinical dietetics. She has two adult children. She held positions as a teacher and Director of the Dietary Department at a skilled nursing facility prior to becoming physically disabled. Due to the devastation that this disease has wreaked on her family, she volunteers her time as a patient advocate and also in assisting organizations that are dedicated to finding a cure for GNEM. Her aim is to create a coalition of patients globally that helps researchers find an effective cure for GNEM. Tara embraces all cultures, speaks six languages, and can listen with empathy. She currently writes a blog about GNEM.