31st AUG 2020
Our campaign on social media was carried out throughout the 31 days of August. There are so many different facets to living with SMA. Scientific fact sheets and a diverse range of stories were put together and shared every day. We normally read all about the scientific aspects of SMA, but it is good to hear directly from those who experience the disease. A wide range of people from the community were given an opportunity to speak about their daily lives, challenges, and other topics that are important to them. In one video, the grandfather of a child with SMA gives his perspective. In another, parents discuss how they lack support of professional team of multidisciplinary doctors necessary in SMA. One mother talks about social stigma with an SMA kid. There are also insights about various medical and physical challenges and non-availability of the drug in India.