This emotional ACT for SMA film was shown at the charity’s annual Butterfly Ball, which was held on October 22 at the Branston Hall Hotel in Lincoln, UK. It features parents of children with SMA and their personal stories. The ball raises awareness of spinal muscular atrophy (SMA) and funds to help families affected by the disease.
Emma and Karl Cadence set up the UK-based charity in memory of their daughter Ally who was diagnosed with Type 1 SMA at six months old. Sadly, Ally passed away 12 days after diagnosis. The Ally Cadence Trust for Spinal Muscular Atrophy helps support the parents of babies who have been diagnosed with the genetic disease. When Emma and Karl were faced with losing their daughter to the disease, they felt very alone and confused with no one and no place to turn to. Now they hope they can offer emotional and practical support to parents who are going through the same experience.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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