Author: Marni Smyth
New Facebook Group, ‘TreatSMA Community’s Physio and Exercise Ideas and Tips’
TreatSMA has launched a new Facebook group called TreatSMA Community’s Physio and Exercise Ideas and Tips
Letter written regarding policy on shielding for paediatric patients
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 hospital if you are facing issues so we can make sure our letter reaches them.…
Joint Committee on Vaccination and Immunisation (JCVI) recommends unpaid carers should be in Priority 6 category for Covid-19 vaccination
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 the full press release here. However please note you must be coded as a carer…
Upper Limb Assessment – downloadable document for 10/01/21 Physio with Marion session
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 and practise. You can download the Upper Limb Scale here
Survey exploring the effects of catching Covid-19 in people with, and carers of people with, SMA
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. There are two surveys, one for people with SMA and one for parents/carers of people…
Family Fund offers iPad/laptop grants for disabled children
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
A Look Back at 2020
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 to post educational Webinars as a community resource – totalling 36 Webinars, you can watch…
Reassurance over treatments and Brexit
We have spoken to Roche, Novartis Gene Therapies and Biogen about the continued supply of treatments for Spinal Muscular Atrophy. All three companies have clearly indicated that over the past 2 years they were preparing for various outcomes of Brexit negotiations, including a no deal option. As a result of those preparations there is now…