how your Money helps
The video below was filmed at our Information, Support and Social weekend in April 2018 and includes reflections from some of the families affected by SMA.
We are grateful to Lotteries who fund 70% of the cost of this service. In 2016, with this and your donations, we supported more than 260 individuals and families affected by SMA.
In 2016, more than 6,700 people visited our information and support website landing page. Our information sheets and Route Maps give accurate, evidence-based, reliable and up-to-date information.
In 2016, we sent out 30 multisensory toy packs for babies with SMA Type 1 or SMARD.
In 2016, our April Information Day was attended by over 170 people and the Sunday Fun Day by over 180. Nearly 300 people met up at our four Winter Events, held across the UK.
More than 3,000 people who visited our website in 2016 visited the Research landing page.
Promising treatments for SMA are being developed which need to be tested in clinical trials. It can sometimes take years to find enough people. We help fund the Patient Registry which can speed this up.