It is felt there is not enough data in terms of covid-19 in Spinal Muscular Atrophy, therefore we would appreciate it if people who have had covid-19 within the SMA community could fill out one or both of these surveys.…
Dear community We understand there are some difficulties for children with SMA around getting support to shield, therefore alongside community member Irvana, we have written this letter to send to the CEOs of hospitals. Please do let us know your…
We have seen a lot of parents/unpaid carers enquiring whether they're prioritised for the Covid-19 vaccination. Carers UK issued a press release stating unpaid carers were to be included in priority group 6 for the Covid-19 jab, you can read…
This week, during the webinar, Marion will be using the Upper Limb Assessment. This is available to download below so that during the webinar you can self assess which will help to give you an idea of activities to try…
We were sent this information and thought it may help some families to know Family Fund offers grants towards ipad/laptops for disabled children. To find out if you are eligible or apply please visit their website here
TreatSMA wish you good health and access to treatments in 2021. 2020 was a busy year for us as we continued to fight for access for children and adults to Spinraza, Zolgensma and the EAMS for Risdiplam. We have continued…
It’s been a long wait and somewhat of a battle but we are pleased to announce that Cambridge University Hospitals have finally approved the use of risdiplam through the DTC in line with the EAMS guidance.