In May 2025 I'm competing in the Alcudia Mallorca Ironman 70.3 , in order to raise money for Ring20 Research & Support Charity. I came across this charity through a colleague at work, whose daughter Lily has Ring20 Chromosome Syndrome. R(20) syndrome is an ultra-rare disease, the main symptoms being difficult to treat epilepsy, cognitive decline and behaviour disorder. Lily's seizures started when she was 6 years old. She is now 12, struggles massively with everyday life and uses a wheelchair to get around. Over the past 6 years, Lily has gone through Neuro-surgery and various medications have been trialled, but none have made a significant impact in reducing the seizure activity. When she is going through a bad patch, most of the day can be spent in seizure.

She currently attends an independent specialist school which she really enjoys. Outside of school, Lily loves colouring and playing with her toy horses. She used to attend a horse riding school, but had to stop as her seizures were being triggered by exercise and physical activity. It's a very difficult situation that has a profound impact on Lily, and her parents and elder sister. She is continually trying new medication, but the chance of this having a significant positive impact is very low, practically zero.

There are other areas that can help, which is where Ring20 Research & Support Charity come in. Their mission is to provide support for individuals, families and healthcare professionals who are affected by, or who come into contact with Ring Chromosome 20 Syndrome. They do this by:

• Providing support and information to r(20) patients and their families;

• Providing or assisting in the provision of information to the public about r(20);

• Supporting medical professionals in their understanding of r(20) - its diagnosis, prognosis and treatment;

• Supporting research into r(20) - its causes and the means to improve the outcomes for those suffering with r(20), and promoting the dissemination of the useful results of such research

With your help, we can help the charity to continue their incredibly important work, raising awareness and supporting medical professionals, families and patients.