EdFest, which takes place at Chingford Rugby Club from 12pm tomorrow (29th August), will raise money for children with Spinal Muscular Atrophy Type 1 (SMA), writes Marco Marcelline
A festival aimed at disabled children and their parents is set to take place tomorrow (Saturday 29th August) from 12pm at Chingford Rugby Club.
Speaking to the Echo, EdFest founder Megan Willis said: “EdFest was founded from my own journey as a mum to my son, Edward, who is disabled. I wanted to create something truly inclusive where disabled children, their families and the wider community could come together, have fun and feel included.
“What started as an idea to create an accessible and inclusive family festival has grown into EdFest, and I honestly never imagined the support we would receive from the local community. We’ve now sold over 250 tickets for our very first event, which feels incredible!”
The festival, which costs £5 for grown-ups and is free for children, will include entertainment, games and activities, live music, a quiet space and accessible activities, with Megan stating her aim is of “creating a fun day where everyone can come together and enjoy themselves”.
The event is also raising funds to support Edward’s ongoing therapy and equipment needs.
At just eight weeks old, he was diagnosed with Spinal Muscular Atrophy Type 1 (SMA) – a rare and life-limiting genetic condition that affects the muscles used for moving, breathing and swallowing.
EdFest exists to also raise awareness and vital funds for children living with SMA and other rare conditions.
Megan says every detail of this festival – from the sensory room to the quiet play area – is built so that “children of every ability can play, laugh and belong side by side”.
The event comes amid greater awareness of the condition thanks to former Little Mix singer Jesy Nelson who has campaigned for every baby to be tested after her twins were diagnosed with SMA at six months old.
Yesterday (27th August) the BBC reported that newborn babies will be given a heel-prick test for SMA from October in a national trial.
The five-year study, led by Professor Laurent Servais, a paediatric neuromuscular disease specialist at the University of Oxford, will investigate whether adding SMA to the routine newborn blood spot test is effective, practical and cost-effective for the NHS.
The trial will be rolled out nationally from October 2027 after a phased start in Birmingham, Manchester and London.
Find out more about EdFest on their website and learn more about Edward’s journey with SMA on Instagram
You can find Chingford Rugby Club at 291 Waltham Way, E4 8AQ
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