I'm forwarding this message for Lucy Frost, one of the inspirations behind The FaceBook page and Website, TreatSMA. She is the mum of a 7 year old with SMA Type 2 and has been instrumental in the fight to get Spinraza (also called nusinersen), the first treatment that targets the underlying cause of SMA, agreed by NICE, although not for all those with SMA. TreatSMA has set up this all day event as follows:

https://www.treatsma.uk/…/massive-huge-unmissable-sma-even…/

"TreatSMA is going live all day on Facebook on the 28th September with a huge event jam-packed with speakers covering lots of different aspects of SMA, ranging from physiotherapy to science.

As part of the UK SMA Awareness week is inviting you to watch and participate in our ‘SMA LIVE DAY’ on Saturday 28th September on this event page. This day is a live stream of professionals and community members sharing their experiences, skills and knowledge to the SMA community and wider public which will then spread information and awareness.

This exciting day begins at 8am and will finish at 7pm. We have twenty two people speaking so it is one jam packed day not to be missed. The agenda for the day is as follows...."