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Adult SMA Reach
Our project has just received funding from Biogen and Roche to be extended until 2025. This means we can continue to collect patient data, which will allow us to gain a more in-depth insight into disease progression and the effects of current treatment.
Some of our sites are ready to start collecting data, which is a very exciting milestone for us, after all the hard work the team has put in to make this happen.
We have hosted a couple of training sessions for the participating staff at our sites, including an Adult SMA REACH Physiotherapy workshop in June 2022.
SMA Awareness Month, August 2022
Spinal Muscular Atrophy Awareness Month is to educate and promote awareness of SMA, through national, local and international activities. It is also to raise funds for additional research and aid in the hunt for a cure for SMA. The aim of this campaign is to help make positive changes for those living with SMA and bring about future advances to SMA overall.
There are lots of SMA organisations who are involved with celebrating this event, see if there’s one near you! Please find these organisations on our For Patients section.
SMA UK are encouraging patients to share their story, they also have organised a fun treasure hunt you can do anywhere you like, simply apply for a free fundraising pack here: SMA Awareness Fundraising – Spinal Muscular Atrophy UK (smauk.org.uk)
SMA Awareness Month is celebrated globally! Cure SMA – an American patient organisation – have lots of information on everything SMA, to find out what they are doing in celebration of SMA Awareness Month, please visit their website : Spinal Muscular Atrophy (SMA) Awareness Month – Cure SMA
Newborn Screening (NBS)
Newborn screening (NBS) involves a blood test and is used to check for rare but serious health conditions.
SMA is not currently included in the UK NBS programme, the earlier diagnosis of SMA the better outcomes for SMA patients due to access to different treatment e.g. gene therapy.
Great Ormond Street Hospital (GOSH) who run SMA REACH UK – a data collection study following SMA paediatric patients – published an article highlighting the benefits and feasibility of NBS in SMA. Find the link here: Pre-screening for Spinal Muscular Atrophy could change lives | Great Ormond Street Hospital (gosh.nhs.uk)
Other countries around the world routinely screen for SMA, including majority of states within the U.S, and some countries within Europe e.g. Germany, Belgium, Norway.
It is a big goal for many to get SMA testing implemented into NBS globally.
The European Alliance for NBS in SMA was formed to establish this vision and make it a reality for it to be implemented throughout Europe by 2025. The link below gives a good visual map of what is happening within Europe regarding NBS for SMA.
Map – SMA Newborn Screening Alliance (sma-screening-alliance.org)
‘A Guide to the 2017 International Standards of Care for SMA’ by TREAT-NMD
This guide published by TREAT-NMD, is for individuals living with 5q SMA, as well as their families/caregivers, in the hope to provide more information alongside the services of your healthcare provider. It highlights standards of care, what care you might expect and is hoped to aid with starting active discussions with medical teams surrounding your condition management and other available options.
