The Ally Cadence Trust is a UK Registered Charity, committed to supporting families affected by Spinal Muscular Atrophy, also known as SMA, Type 1 and Spinal Muscular Atrophy with Respiratory Distress (SMARD). Spinal Muscular Atrophy is a neuromuscular genetic disease that results in progressive muscle weakness. Click here to read more
"The Ally Cadence Trust for Spinal Muscular Atrophy aim to protect and promote the physical and mental health of sufferers of Spinal Muscular Atrophy and their families across the United Kingdom, through the provision of support, education and practical advice and funding into research into the condition. Also to advance the education of the general public in all areas relating to Spinal Muscular Atrophy."
The History behind the Ally Cadence Trust
Ally Cadence was the daughter of Emma & Karl, the founders of the Ally Cadence Trust for Spinal Muscular Atrophy (ACT for SMA). She died aged six months, just twelve days after being diagnosed with Spinal Muscular Atrophy (SMA) Type 1. Her family hadn't heard of SMA until a few weeks before she was diagnosed, and after the diagnosis they were told about support families that would contact them. These families are people who have been affected by SMA in the past and, while not qualified in any particular field, they can answer basic questions that arise on a daily basis.
In the twelve short days after Ally's diagnosis, her family had a lot of support from the NHS, but they never got to meet their allocated SMA support family. They would have been the one point of contact that could see things from a parents point of view and it was mainly this that inspired Ally's parents to set up ACT for SMA. They felt that parents with recently diagnosed children deserved a quick response to a request for support and information on Spinal Muscular Atrophy, should it be requested. The answer was the Ally Cadence Trust for Spinal Muscular Atrophy, a way to provide others with a simple, yet highly important, level of support that is often underestimated.
Ally was a very happy little girl who never stopped smiling, she loved life and would be proud to have played her small part towards helping others love life too. Having read a lot of misleading information online regarding support from other charities and organisations, Ally's family were dissapointed to discover that very little of the specialised equipment was actually available. This was simply due to a lack of funding and so the Ally Cadence Trust for SMA was set up to try and generate a new line of funding and raise awareness of Spinal Muscular Atrophy nationwide.