Our Team

We are an international group of GNE Myopathy patients, their family and friends, with the mission to generate awareness about this rare genetic disorder among patients and communities worldwide, and to provide information and support to patients.

Meet Our Team

team

ALOK BHATTACHARYA, INDIA

Alok is a Professor in the Schools of Life Sciences & Computation and Integrative Sciences at Jawaharlal Nehru University, New Delhi.He has contributed in number of areas including biology of the parasite Entamoeba histolytica, computational genomics and microRNAs in cancer. He has been instrumental in starting an interdisciplinary computation biology teaching and research program in JNU. After his daughter’s diagnosis with GNE Myopathy he has been involved in various research efforts to improve the scientific understanding of rare diseases and GNE Myopathy.

View More
team

SUDHA BHATTACHARYA, INDIA

Sudha is a Professor of Molecular Biology at the Jawaharlal Nehru University, New Delhi. She has been teaching and researching in the areas of Molecular Parasitology and gene regulation for over thirty years. After her daughter was diagnosed with GNE Myopathy she has been involved in research efforts to understand GNE Myopathy and work towards possible cures.

team

RUSHAB DESAI, INDIA

Rushabh was diagnosed with GNE Myopathy in the year 2011 aged 21 years. He is a Financial Services Professional and is a certified Investment Advisor from the National Institute Of Securities Markets (India). Currently he serves as an Analyst at Motilal Oswal Financial Services Ltd. He is involved in Patient Advocacy for collaborating, educating and raising awareness about GNE Myopathy.

team

ABDULLAH AL SHAMRANI, SAUDI ARABIA

Abdullah was diagnosed with GNE Myopathy in 2006 after an incorrect diagnosis of Limb Girdle Muscular Dystrophy in 1999. Abdullah uses a wheelchair for mobility and works full time, yet still manages his energy to participate in regular physical therapy. He volunteers his time contacting various organizations and hospitals in Saudi Arabia with the intention of increasing the awareness of GNE Myopathy in Saudi Arabia.

team

TARA VOOGEL, UNITED STATES OF AMERICA

Tara was born in British Guiana. She is the fourth of seven siblings, five of which 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. She has completed her teacher’s training and has received a degree in clinical dietetics. She subsequently held positions as a teacher and Director of the Dietary department at a Skilled Nursing Facility prior to becoming physically disabled. She volunteers her time as a patient advocate and also assists organizations that are dedicated to finding a cure for GNE Myopathy. Tara currently writes a blog about GNE Myopathy.

View More
team

SHILPI BHATTACHARYA, INDIA

Shilpi was diagnosed with GNE Myopathy in the year 2009 aged 27 years. She is a lawyer by profession and has previously worked as a securities lawyer for a British law in Singapore. She received a Ph.D. degree in 2016 from Erasmus University Rotterdam in the Netherlands in the field of Competition Law. She is currently an Assistant Professor of law at O.P. Jindal Global University in India and devotes her free time to patient advocacy for GNE Myopathy.

team

MONA PATEL, UNITED KINGDOM

Mona was diagnosed with GNEM in 2002 aged 29 years. She graduated from Birmingham City University with a degree in Sociology & Developmental Psychology. After graduating, she worked for the BBC and National Health Service (NHS), and since 2000, Mona has been working for Manchester Metropolitan University as an Equality & Diversity Specialist. Her role helps to strengthen equality legislation, ensure inclusivity and diversity within the University. Her impactful work for disability equality has led to her becoming a Founder Member and Communications Lead for the National Association of Disabled Staff Networks (NADSN). In addition, Mona’s voluntary work involves being a Literature Reviewer for NHS HealthWatch and a Member of her local Patient Forum. In 2016, she became a Fund Raiser for GNEM.
Mona is very keen to develop into a European GNEM Patient Advocate in order to support and represent patients and their family/carers. Mona is a devoted mother, wife, daughter and friend.

View More
team

IMAD KAZIM, UNITED STATES

Imad is the youngest and only brother amongst a total of five siblings, two of whom have GNE Myopathy including himself. Imad grew up watching his oldest sister progress through the condition and slowly become wheelchair bound, not knowing how or why. Imad started developing similar symptoms during his years in college while pursuing his Master's Degree which became more apparent in the early years of his career. As the trips and falls became more frequent, so did Imad's suspicions as to what it was. He was finally diagnosed with GNE Myopathy in the year 2013 at the age of 24. 
However, life did not stop there for Imad. He persevered and made it his ambition to stay healthy and continue living a normal life. Imad currently works full-time as a Data Analyst for a telecom-based startup in the financial district of Boston and enjoys spending time outside with family and friends. Imad has also participated in various investigational studies in order to contribute towards data collection to aid researchers better understand the condition. Imad also tries to stay involved with patient advocacy groups for GNE Myopathy. Besides that, he assists GMI in any way possible in order to help them move towards a treatment or cure.

View More