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Are you sitting comfortably…

  • 05/12/2018

Please note all views are my own and are not affiliated with the company fledglings.

Just the ability to sit is a luxury most of us take for granted and something which a lot of people with SMA find difficult or even impossible. Before finding this product, the only seating my daughter had was a big clumpy tumble form chair and her Wizzybug, everything else was on normal seats being propped up by a gazillion cushions whilst still flopping over, floor play was nigh on impossible and bath time out of her own home was a nightmare.

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Another letter to speed up the process

  • 04/12/2018

Today TreatSMA along with SMA Support UK and Muscular Dystrophy UK sent another letter to NICE, in which we asked that nusinersen be placed on the agenda of the nearest Committee C meeting which will take place on 6 February.

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Delays in access to treatment: The SMA Community sends letters to key stakeholders

  • 30/11/2018

The untimely closure of the Expanded Access Programme of nusinersen and the continuing delays in having this treatment available on the NHS amount to a death sentence for babies diagnosed with the most severe form of SMA. For hundreds of others, they mean an irreversible muscle function loss. We the families at TreatSMA, just like the wider SMA community, are all incredibly frustrated with the apparent lack of progress while watching our near and dear ones waste.

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