A COUPLE from Walcott who set up a charity in memory of their baby daughter have raised approximately £50,000 since launching.
Emma and Karl Humphries set up the Ally Cadence Trust for Spinal Muscular Atrophy (SMA) after their daughter died in 2009 at just six months old from the genetic disease which is currently incurable and often fatal.
Emma said: "We've been doing lots of fundraising events since we started including an annual ball, a sky dive, we climbed Mount Snowdon, did a sponsored swim as well as things like gift fairs and quiz nights.
"The money we raise is spent on vital equipment such as special car seats, monitors, prams and sensory toys for families living with this disease."
As well as giving financial support to those in need the charity also provides emotional support.
Emma said: "We were contacted by a family in Cornwall in 2011 who had lost a child to SMA the year before.
"We went all the way down to visit them and just spent time talking with them and answering their questions because we've been through it so we knew exactly how they were feeling and that can be really beneficial for anyone going through this sort of thing."
This year members of the charity have planned a string of fund-raising events including a tandem skydive, a triple-whammy sponsored event which involves a zip-wire and abseil, as well as quiz nights and craft fairs.
They also plan to visit all the health visitors in the local area to discuss the charity and how they can raise funds for more training as many health visitors are not trained to deal with SMA.
The charity requires more volunteers to help out with duties such as contacting PR companies who may be able to donate raffle prizes.
If you would like to volunteer or find out more about the work they do visit the charity's website at www.actsma.co.uk