FSMA India Vision and Mission

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About FSMA India

Families of Spinal Muscular Atrophy (India) TRUST, FSMA India aims to create awareness about the disease SMA in India the number one genetic killer of children in the whole world. We will not let SMA and other rare diseases to rob children and adults of health, happiness, dignity and productive life. FSMA India aims to bring a treatment to India to cure all children and adults affected by SMA and improve the quality of life of all SMA patients, We also aspire to bring treatments from abroad and also support SMA research locally.

The freedom to walk, to talk, to run and play. To laugh, to hug, to eat — even breathe.

Each day these freedoms are taken away from kids and adults with muscular dystrophy, ALS and related diseases that weaken muscle strength and limit mobility. Together we can change that.

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SMA Awareness

August 2019

Pratishtha Gupta

Hi all, today i am sharing my live experience with this deadly disease SMA (spinal muscular atrophy). I am Pratishtha gupta 26 years old working as a Assistant Manager in BOB and when i turned back i see these 26yrs taught me so much i have seen almost everything and at every moment i thought […]

Pooja Arora

Hi! I’m Pooja Arora, from Noida. I am working as a Software Engineer at MNC. Also I am pursuing Advanced Management Programme in Business Analytics from Indian School of Business, Hyderabad. “Bright star, would I were stedfast as thou art.” The above line is the essence of my life born with a physical disorder Spinal […]

Seba

Last week, I watched the movie titled ‘Thozha’ in television. This is probably the fifth time I am watching the same movie over again. Each time, the movie reminds me of my desire to visit Paris. I have always dreamt of going off to Switzerland and Paris since my very childhood. I love traveling so […]

Akshat & Roli

This is Akshat and Roli born and raised in Varanasi, UP. Roli & I were born in 1995 & 1997 respectively, back then SMA was an uncommon disease, half of the doctors, out of unawareness used to claim that weakness is bcoz of the lack of vitamin/calcium. Both of us were diagnosed for SMA in […]

Garvit Tyagi

My Life was very smooth and became lovelier when I was blessed with a baby boy Garvit. We enjoyed every moment of his infancy till he was 6 month old. After touching the 6 month milestone I was able to sense that my baby boy was struggling. He was then diagnosed with a non curable […]

Mudita Jagota

Hi! I’m Mudita Jagota, from Faridabad. I’ve recently graduated from Lady Shri Ram College for Women, New Delhi – B.A. (Hons.) Psychology. I will now be pursuing M.A. (Applied Psychology) from Jamia Millia Islamia University. I was diagnosed with SMA when I was one year old. Although I don’t have any memory of how exactly […]

Saifullah Khalidi

I’m Saifullah Khalidi, born in Lucknow and raised in Barabanki, Uttar Pradesh. I’m a graduate and now preparing for competitive exams. Being a patient of SMA, it’s very difficult to get even basic tasks done. To get a spoon to reach my mouth feels like carrying tons of mass. The world is so much inaccessible […]

Kavya Sehgal

Kavya was born in January 2008 to us at Moolchand hospital, Delhi. When she turned 4 months old we noticed she was not holding her head or moving her legs, though she had movement in her arms. We raised these concerns with her Pediatrician who referred her to a neurologist. The neurologist immediately suspected Spinal […]

Our

Activities

SMA August Awareness Month 2020

joint session with Roche India to promote Risdiplam drug in India for SMA The way forward Nov 2019

Access and Mobility Camp July 2019 Noida

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Contact Us Now !
+91 95609 06681
+91 97116 96013
+91 96508 38484

Contact Us Now !
+91 95609 06681
+91 97116 96013
+91 96508 38484