Tara Voogel

United States – Western Region

Tara was born in British Guiana, and she has lived and worked in different countries and cultures. She completed her teacher training in Suriname. She worked in various positions in the Ministry of Education, the Embassy of India, and the Indian Cultural Center.

Upon moving to the United States she pursued a degree in clinical nutrition and received her degree as a Dietetic Technician Registered.  During this time she lived on the campus of the University of Southern California, Los Angeles, where she interacted with many cultures and led an informal exercise program for the wives of international students.   While in Los Angeles she also worked as an instructional assistant teaching English as a Second Language to South Koreans and Latin Americans.

Later on, before she became physically disabled, she worked as the Director of the Dietary Department at an acute hospital and a skilled nursing facility.  Her duties there included assessing patients’ laboratory values, nutritional status, and making dietary recommendations to physicians.  She was also part of the interdisciplinary team in charge of monitoring and assessing patients’ progress.

Currently Tara writes a blog about her disease and reaches out to GNE Myopathy patients, families, and doctors worldwide. She has co-founded GNE Myopathy International. She dedicates her time to assist patients globally in getting accurately diagnosed, in finding resources, and connecting them with supportive services.

She is interested in exercise and the effects exercise has on muscles. Her motivation is to seek an effective treatment for GNE Myopathy as she has seen the suffering it has caused in her family members, five of whom have this disease.  Over her life she has learned to adapt, understand, and transcend boundaries and limitations of all kinds.  She embraces all cultures and can listen with empathy. She reads, writes, and speaks English; and she understands and speaks Hindi, Spanish, and Dutch.