By Shilpi, GNE myopathy, India, October 22, 2019
A short film on GNE Myopathy patient Shilpi and narrated in her own words. Shilpi is a lawyer and currently teaches at O.P Jindal Global University. It was only in her twenties that she learnt that she suffered from this rare and progressively debilitating genetic disease. In time she shall be completely incapacitated. She and her parents eminent Bio-Scientists Alok & Sudha Bhattacharya have founded World Without GNE Myopathy (WWGM), an NGO to aid scientific research towards finding a cure.
Watch here: https://youtu.be/K0Q13XXhmQo
Learn more about GNE Myopathy and WWGM at http://gne-myopathy.org/