MP seeks govt help for kids suffering from spinal muscular atrophy


    New Delhi, March 17 | Congress MP Vivek Tankha during zero hour in the Rajya Sabha on Wednesday raised the issue of children suffering from spinal muscular atrophy.

    The Congress MP raised the matter and demanded the government to take up theissue with the drug manufacturing company so that the drug becomes cheaper. He also demanded that the medicine should be provided to all those children who are suffering from this genetic disease.

    The company Novartis manufactures the drug named Zolgensma for gene therapy to treat spinal muscular atrophy. Zolgensma is the most expensive medicine in the world and it costs 2.1 million US dollars, about Rs 15.24 crore in Indian currency. One injection is enough to correct the genetic defect.

    “There is a tax component on it of around Rs 7 crore,” said Tankha.

    Recently the Prime Minister waived the tax for a Mumbai based child after a request from former Chief Minister Maharashtra Devendra Fadnavis.

    The parents of the child, Mumbai-based Priyanka and Mihir Kamat, managed to gather the money through crowdfunding for the couple’s six-month-old daughter Teera, who suffers from Type I Spinal muscular atrophy and requires a ventilator at home and a feeding tube.

    Vivek Tankha said every year Novartis conducts a lottery and provides the injection free to 100 children. “From India a few children were fortunate to have got it free of cost in this way, around 2,000 children are suffering from this disease,” said Tankha.

    The disease is a genetic disorder in which one defective gene causes muscles weakness and degenerates its normal functions. This rare disorder is found in one of every 10,000 babies with most unable to survive beyond a few years.

    Source: IANS

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    Social Media Expert And Founder Of Aapno Rajasthan Durgesh Dhaker Gives His Two Cents On Growing One's Reach Online

    Social Media Expert And Founder Of Aapno Rajasthan Durgesh Dhaker Gives His Two Cents On Growing One's Reach Online

    “Work and you’ll get what you need; work harder and you’ll get what you want”.

    The above-mentioned quote speaks volumes about the courage of those who have made substantial breakthroughs in their life with hardwork and dedication.

    One such committed individual who is preparing several notable names with their social media reach is Durgesh Dhaker. An agile and someone who keeps himself upbeat with the happenings in the country, Durgesh has acquired expertise in carving the social media strategies for various stalwarts. He is also the founder of Aapno Rajasthan

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    Coming from the beautiful city of Chittorgarh in the land of Rajasthan, Durgesh Dhaker is making his parents and fellows pride of his strides and success acquired through hustling with perseverance. His social media expertise enables him to give his top tips for growing one’s social media presence, it is as below-

    1-Create a network

    Social media comprises of a huge number of people who need to build their reach, subsequently, it turns into a fiercely cutthroat spot where every individual is attempting to draw in mass consideration, thus it is basic that we upgrade our activities to pick a specialty which suits our inclinations, it ought to be something that you are prepared to deal with for quite a while of your life.

    Zero in on making an intuitive substance that can be discovered when somebody looks for it, the most ideal approach to do is to is utilize significant hashtags on Facebook, Twitter, etc.

    2-Create steady, quality posts that are relatable

    Today, the web has enough data however we can help our supporters discover quality data that isn’t excess by posting relatable substance according to our niche, recall, forthright, valuable, and quality substance is as yet restricted on the web, consequently assuming you give individuals what they are searching for reliably, gradually and slowly, you will see considerable development in individuals who follow you.

    3-Social media showcasing/connecting websites

    Social media marketing is perhaps the most ideal approach to get ideal reach online, to see speedy outcomes, posting cool videos, and opinion on the latest happenings are some methods which can be deployed. If one has a website on their name or related to their field of work then those can be attached on social media profiles to promote them better.

    In a nutshell, we can conclude that, according to Durgesh Dhaker, the top way to grow your social media presence is by being relevant and consistent with the content that is suited to the tastes of your target audience, linking several web pages and blogs to boost traffic and last but not the least correct marketing of your content that can lead to conversions.


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