A ball to celebrate the life of local vet John Hunter has also raised some £3,000 in vital funds and awareness for the rare diseases charity, Timothy Syndrome Alliance, writes Annie Smith.
Rosie Hunter-Rosser enlisted the support of an army of friends, led by Charlotte Lodge of Box-based Keystone Conference and Events Management to hold the Hunter Moon Ball in Stroud last weekend.
Held at the Hill, some 100 guests danced the night away with music from the Shadow Monkeys and TNT, a raffle and silent auction organised by Kathryn Danks, as well as sponsorship from Peter Joy Estate Agents, Mark Pollard Heating & Plumbing and Alison Hodges of A Star Tutoring.
A film made by Limestone Media’s Rob Bradshaw featuring the work of the Minchinhampton-based charity was played to assembled guests. The Timothy Syndrome Alliance (TSA) was established five years ago in the UK by Sophie Muir, whose middle son, Calvin (17) was diagnosed with the rare genetic condition when he was ten.
Sophie said: “Organising this ball was such a kind and thoughtful display of support from a group of friends who’ve seen me put my heart and soul into growing the TSA global community from my kitchen table in Minch, so that anyone with this rare disease can find our tribe.”
The charity recently joined the Chan Zuckerberg Institute’s Rare as One Network with a grant of $800,000 to help connect researchers working in the field of CACNA1C-related disorders, including Timothy Syndrome and LongQT8.
Rosie, an NHS physiotherapist said: “Many of us first met Calvin at Minch nursery and primary school and we witnessed the ten-year diagnostic odyssey that Sophie and her family fought to seek answers for Calvin’s many challenges.”
“We’ve watched in awe as Sophie’s quietly set-up a global community that’s now attracted support from the likes of the Zuckerbergs. We feel the local Gloucestershire community should be equally aware of Sophie’s determination and dedication. I also wanted to do something positive and celebratory for my much-missed dad and I’ve been blown away by the number of local businesses who donated to our auction and busy friends who event-managed, raffle-wrangled and danced the night away,” she concluded.
Find out more information and donate to the work of the Timothy Syndrome Alliance here
