Helping the needy - Donation / Voluntary Work / Charities

Flanker99 · 10th March 2025, 14:55

Spinal Muscular Atrophy (Estimated incidence is 1 in 6,000 to 1 in 10,000 live births)

The below appeal is from my colleague and team member.

Baby Adi is 14 months old and has been diagnosed with Spinal Muscular Atrophy. There is no cure for this, but treatment options are available - Zolgensma (one-time gene therapy injection) and Risdiplam (syrup/tablet for the rest of his life). Zolgensma needs to be administered before he turns two years old, while Risdiplam needs to be started immediately to prevent further nerve and muscle damage. Zolgensma would cost around Rs.10 crore, while a bottle of Risdiplam costs Rs.6 lakh. This is way beyond the reach of an Indian middle class family.

Saving Baby Adi (link to the fund raising campaign)

Besides financial help, any connects with influential people (politicians, NGOs, social media influencers) will be of immense help.

Posting it on TeamBHP for wider reach. Thank you.

10th March 2025, 14:55	#76
Flanker99 BHPian Join Date: Aug 2015 Location: Mumbai Posts: 179 Thanked: 695 Times	Re: Helping the needy - Donation / Voluntary Work / Charities Spinal Muscular Atrophy (Estimated incidence is 1 in 6,000 to 1 in 10,000 live births) The below appeal is from my colleague and team member. Baby Adi is 14 months old and has been diagnosed with Spinal Muscular Atrophy. There is no cure for this, but treatment options are available - Zolgensma (one-time gene therapy injection) and Risdiplam (syrup/tablet for the rest of his life). Zolgensma needs to be administered before he turns two years old, while Risdiplam needs to be started immediately to prevent further nerve and muscle damage. Zolgensma would cost around Rs.10 crore, while a bottle of Risdiplam costs Rs.6 lakh. This is way beyond the reach of an Indian middle class family. Saving Baby Adi (link to the fund raising campaign) Besides financial help, any connects with influential people (politicians, NGOs, social media influencers) will be of immense help. Posting it on TeamBHP for wider reach. Thank you.
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