We aim to get as much publicity as possible to raise awareness of SMA and to show the need for the provision of treatment for children and adults with all types of SMA.

Earlier this year we started a media campaign aimed at highlighting the urgent need for swift access to treatment under the Spinraza Expanded Access Programme for all babies and children with SMA type 1. We encouraged families of children with SMA type 1 who wished to tell their story to the media to do so. Many amazing families contacted the media and some of the stories can be found on this page.

https://www.hastingsobserver.co.uk/news/hastings-family-of-toddler-with-life-limiting-condition-call-for-specialist-drug-to-be-more-widely-available-1-7951789/