Celebrities, youth come together for spinal muscular atrophy awareness campaign in Kerala

Kerala-based NGO’s MIND and Prajaahita are holding ‘Spinal Muscular Atrophy Awareness Month Campaign’ throughout August which is celebrated as Spinal Muscular Awareness month across the globe. Celebrities and youngsters are coming forward to support the campaign which began on 1 August.

August is celebrated as Spinal Muscular Atrophy (SMA) awareness month across the globe. A condition that leads to weakened muscles and decreased muscle tone, SMA can affect the life of a person in many ways. In India, there are thousands of people affected by this condition and hence there is a larger need for awareness too. Kerala-based NGO’s Mobility in Dystrophy (MIND) and Prajaahita Foundation have joined hands for ‘Spinal Muscular Atrophy Awareness Month Campaign’ from 1 to 31 August.

Importance of a campaign to support awareness

In spite of lakhs of people being affected by SMA across the world, awareness about the condition is way lesser in society. MIND and Prajaahita are aiming to bridge barriers. The organizers are hoping that their message is heard loud and clear to everyone by expecting a participation of at least 10 lakh people. They have divided the campaign into three sections.

The first one is focused on making medicines for SMA which can be made available to the common man. Most of the people affected with SMA in India has given up hopes of procuring its medicine because of the high cost. Reportedly, it cost up to Rs 5 crores every year. The medicine ‘Spinraza’, which can cure the condition, has to be taken life-long. If the medicine is manufactured in India, the cost is going to be way lesser and can also be made available to the common man. The campaign hopes to bring forth this message.

Secondly, rehabilitation of people with SMA is need of the hour. Most of them are supported by their caretakers, often family members like parents or siblings. But this cannot go on forever after their close ones pass away. So a rehabilitation center is inevitable. A space that promotes education and job opportunities is something that needs to be startd soon. The center can also provide medical facilities and physiotherapy sessions to not just people with SMA but all those across the disability space.

Thirdly, the campaign highlights on the importance of caretakers of people with SMA. ‘Support for caretakers’ aims to tell caretakers that they are not alone. Society must also understand the need to reach out to them.

A sea of support

One of the first people to share details about the campaign on social media was Malayalam superstar and leading actor Prithviraj Sukumaran. The actor posted about the relevance of the campaign. “Lighting a candle of hope for a million vibrant dreams!”, he posted by further adding, “In this awareness initiative, we welcome and request your participation and support. A Campaign of Love, Hope & Care”.

Veena Venugopal, India’s first wheelchair TV anchor and Member of MIND says, “This is not a fundraiser campaign. But we want to make the society aware about SMA. This is mainly aimed for social media where our message can reach far and wide”.

Apart from celebrities, thousands of college students have also joined the SMA awareness campaign which is indeed a great sign. “Many people are coming forward and we hope the campaign becomes successful by end of the month”, adds Veena.

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