Tune in to health: Different cultures come for show of unity for GNE Myopathy
When she was diagnosed, Shilpi was working at a leading British law firm in Singapore, and was told that she would be wheelchair-bound within a decade or two.
Published: 25th October 2020 05:00 AM | Last Updated: 24th October 2020 08:31 PM | A+A A-
Sounak Chattopadhyay
It’s not every day that science and art collaborate for a cause. A non-profit organisation - World Without GNE Myopathy (WWGM) - that deals with the rare genetic disorder, GNE Myopathy, is set to host a unique concert. Called "An Ode to Shakti", the event is intended to be a show of unity with the coming together of different cultures and perspectives.
The proceeds from the show will go towards raising awareness about the disease, which occurs in young adults and causes progressive muscle weakness of legs and arms, followed by extreme disability. The idea of the concert arose from one of WWGM's ardent supporters - Dr Swati Biswas - who works in the area of rare maladies.
An ensemble of performances by talented artists who are socially conscious and committed to creating an inclusive society, the recital will be headlined by Rahul Ram, member of one of India’s most popular fusion rock bands - Indian Ocean.
Audiences will also be treated to an assortment of audio-visual delights by other well-known faces of this generation - vocalist Sounak Chattopadhyay, narration and poetry by Samya Karpha and dance routines by Rudrava Niyogi and his troupe.
There will also be a showcase of all-time popular retro numbers from Bollywood. "Since this year has been isolating for many, with Durga Puja and other festivals being either cancelled or restricted, we thought it would be a good idea to brighten up the festive season through this concert along with a charitable mix," says the organisation's co-founder Dr Shilpi Bhattacharya, professor, Jindal Global Law School, who was detected with the condition herself.
When she was diagnosed, Shilpi was working at a leading British law firm in Singapore, and was told that she would be wheelchair-bound within a decade or two.
At the time, there was little interest or knowledge about it in medical and scientific communities. The WWGM believes that on the road to find treatments for an atypical disease, the first step is to raise awareness among society and garner support for the cause.
The WWGM is the only organisation in India supporting patients with this disease. It forges collaborations between doctors and scientists to initiate scientific research and find treatments for GNE myopathy and other uncommon genetic syndromes.
GNE Myopathy
The rare muscle disease affects close to one in one million people all over the world. It results in weakness and wasting of muscles in legs and arms. First signs of its onset are usually seen in young adults.
When & Where
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Date: October 25
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Time: 7 pm
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Tickets can be bought here: https://www.musianamiles.com/shows/an-0de-to-shakti
