Forum for genetic disorder patients crowdfunds Rs 45L for exclusive village

The forum decided to crowdfund when it did not get expected government backing

A forum of persons suffering from Muscular Dystrophy and Spinal Muscular Atrophy in Kerala has initiated a novel project of setting up a rehabilitation village for those suffering from genetic disorders.

The forum, Mobility in Dystrophy Trust (MinD), has raised over Rs 45 lakh through a crowd funding campaign started in August titled 'Venam Oridam' (literally meaning 'a space is required' in Malayalam) as there was no government support.

The forum was formed in 2017 and conceptualised the exclusive village with healthcare, education, vocational training and recreation facilities for the patients as well as research facilities on MD and SMA. Around 500 patients suffering from these disorders are part of the forum and have participated in various support programs organised by it. A group of volunteers, mainly college students, are supporting the MD and SMA patients.

MinD treasurer Prajith P told DH that the requirement of an exclusive space for the MD and SMA patients was essential as 95 per cent of the 3,000-odd MD and SMA patients in the state were not getting the proper physiotherapy required. Many MD and SMA patients had high skills and talents. A woman suffering from SMA had even made it to the MBBS course but had to struggle a lot to attain it. Hence, adequate support would ensure that the talents of MD and SMA patients could be tapped, he said.

The campaign coordinator Shameera P said that the village project was conceptualised as a self-sustainable model of generating revenue by using the skills and talents of the MD and SMA patients. Even as many MD and SMA patients were now involved in many vocations like craft making, they have limitations in making revenue out of it. Such issues could be addressed with the project.

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