ACE SMA

ACE SMA's principal target and long-term objective is to enable children to have as much mobility and free movement as they can. Although there is plenty of evidence to demonstrate that movement is hugely important to quality of life, until recently there has been limited scope for what this can actually entail for the majority of sufferers due to the debilitating nature of the condition. Now that new treatments are available there is a better chance of SMA sufferers not only being able to move more freely but even being able to walk where previously they would not have... We are a new charity aiming to raise awareness of the condition Spinal Muscular Atrophy (SMA) and provide support to those who live with it... In 2019 our daughter was diagnosed with SMA. Although a very challenging diagnosis we feel very fortunate to have access to the treatment that she needs. However, we hit problems with gaining access to physiotherapy, as well as a lack of awareness in how the treatment could..

Registration numbers: 1191179 (W), CE023825 (CH)

Primary location: Glebe United Kingdom