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Awareness Activities

Spinal muscular atrophy (SMA) is a rare, genetic neuromuscular and a progressive disorder. The SMA community officially recognizes August as “Spinal Muscular Atrophy Awareness Month”.
During this unusual year, we still worked to engage the SMA community and the general public around SMA Awareness Month by hosting virtual events such as webinars, sharing powerful stories of SMA warriors, and using social media to create awareness and share information about SMA. From webinars to candle lighting, art and singing events for the SMA warriors, and a social awareness campaign on social media, efforts to mark SMA Awareness Month were hugely successful among the community.

The SMA awareness month kicked off with a webinar on Respiratory Care in SMA, on 1st August. Pediatric pulmonologists from Kolkata, Mumbai, Bangalore, and New Delhi participated and spoke on several respiratory issues such as best nebulization practices, Bipap and lung health and more. The interactive session helped the members in getting their several doubts cleared from the best team of doctors.

1 Respiratory Care

It was followed by another webinar on  8th August in association with SRCC Hospital and Roche on “Spinal Muscular Atrophy Reimagined with new Treatment Option” (SMART)”. It covered different modalities of treatment and interventions, recent therapies, perspective of patient support groups like Cure SMA India and the role of multi-disciplinary clinics, providing enriching knowledge.

On 9th  August, we had a virtual round table discussion on “Universal access to life saving medicines-challenges and solutions”. This was the first multi stakeholder discussion on Spinal Muscular Atrophy in India. This is starting point of identifying, categorizing challenges, and working towards finding a sustainable universal access to the lifesaving medicines. It involved DCGI, CDSCO, patient advocacy groups from Europe, representatives from Biogen, Novartis and Roche, doctors/clinicians from all major hospitals from North, South, East and West India, along with Cure SMA India.

3 Round table discussion

On the occasion of Independence Day, 15th  August, we conducted a virtual fancy dress competition for our SMA warriors. In these Covid and lockdown times, it is especially important for all of us to support our children emotionally and these activities are best to engage small children constructively. Kids enjoyed participating in the fancy dress competition enacting their favorite characters and had lots of fun and improved their confidence and public speaking skills.

At sunset, on August  22nd  we held a candle lighting ceremony in remembrance of those who died of SMA, and to honor those living and fighting with it every day. We hope to bring awareness about SMA and unity to the families living with it as we join spreading the light of our candles around the world.

An art competition was announced to the children on 24th  August, which encouraged them to color and draw according to their age group. It helps in building their fine motor skills and promotes their self-esteem and gives an opportunity to showcase their work.

A webinar was organized on August 28th  in association with Aster MIMS hospital, Calicut on multidisciplinary management and awareness sessions for SMA. We had specialist doctors from neurology, orthopedics, gastroenterology, pediatric intensive care, and clinical genetics. It was a very fruitful session with parents able to ask many questions and clarify their doubts.

A virtual musical program for the entertainment of the kids and families was organized on 29th August. Children of all ages participated with excitement and sang songs from all languages and made the program a success.

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.

  1. We released our first annual book “The Journey…” Edition 1 on 28th February 2020 – International Rare Disease Day. It reflects several activities that we undertook in 2019 illustrating our commitment to bring the drug for SMA to India with continuous lobbying with the government and pharma companies and our efforts in creating more awareness among the SMA community about the multidisciplinary management of the disease.

  2. We have published and distributed many booklets, brochures, and leaflets designed to help in the better understanding of the underlying causes, symptoms, and progression of the different forms of SMA among our members, doctors, and the public.

  3. Online SMA communities play a crucial role in raising awareness and exchanging ideas and experiences with others who have SMA and thus help and support one another. We are active on Facebook, Twitter, Instagram, and YouTube.

  4. We have conducted webinars on various topics for raising awareness among the SMA community in India.

  5. Cure SMA India participated in Race for Seven, an awareness run organized by the Organization for Rare Diseases India (ORDI) in 2019 and 2020 in various cities across India.