Chingford festival raises funds for children with rare condition

A festival designed to be inclusive for disabled children and their families is scheduled to take place at Chingford Rugby Club on August 29th. EdFest, which begins at 12pm, will raise funds for children diagnosed with Spinal Muscular Atrophy Type 1 (SMA), a rare and life-limiting genetic condition.

Megan Willis, the founder of EdFest, was motivated to create the event by her own experiences as the mother of her son, Edward, who has SMA Type 1. She told the Waltham Forest Echo, "I wanted to create something truly inclusive where disabled children, their families and the wider community could come together, have fun and feel included."

The festival aims to provide a fun day where everyone can participate and enjoy themselves. It will feature a range of entertainment, games, activities, live music, and a quiet space. Every aspect of the festival, including a sensory room and a quiet play area, has been designed to ensure that children of all abilities can play and feel a sense of belonging together. Tickets cost £5 for adults, with children attending for free.

Funds raised from EdFest will support Edward's ongoing therapy and equipment needs. The event also seeks to raise awareness and generate vital funds for other children living with SMA and similar rare conditions. Edward was diagnosed with SMA Type 1 at eight weeks old. The condition affects muscles used for movement, breathing, and swallowing.

National trial for SMA newborn testing

The festival takes place as awareness of SMA grows, partly due to campaigning by former Little Mix singer Jesy Nelson. The BBC reported on August 27th that a national trial for SMA newborn testing will commence in October 2027. This five-year study, led by Professor Laurent Servais, a specialist in paediatric neuromuscular disease at the University of Oxford, will assess the effectiveness, practicality, and cost-effectiveness of adding SMA screening to the routine newborn blood spot test for the NHS.

The trial is planned for a phased national rollout from October 2027, following initial phases in Birmingham, Manchester, and London. Further information about EdFest and Edward’s journey with SMA can be found on their respective websites and Instagram.