Residents in Catbrook have joined three year old Ivor Washbrook on a 1,000 metre walk around the village to raise money for research into a rare neurogenetic disorder, Angelman Syndrome.
Ivor was diagnosed with Angelman Syndrome just before Christmas last year and over the course of the next month will be walking a complete lap of his home village Catbrook every day.
On Ivor’s inaugural walk, he was joined by local MP and Secretary of State for Wales David TC Davies and local councillors Richard John and Jayne McKenna.
Angelman’s Syndrome is a rare neurogenetic disorder affecting about 1 in 15,000 people. It causes delayed development, severe learning difficulties and issues with movement and balance. Most people with Angelman Syndrome will never talk and some will never walk. They need continuous care and will never lead independent lives.
Scientists believe that Angelman Syndrome has the potential to be cured and FAST (Foundation for Angelman Syndrome Therapeutics) - a not-for-profit organisation that provides funding for UK Angelman Syndrome research - is helping to drive this forwards. There are currently a number of really promising clinical studies and trials worldwide.
Ivor’s parents, Sarah and Andy, would like to thank everybody for all their kind support and said, “It really means a lot. We have raised a huge amount of money for FAST UK so far, and just talking about Ivor and Angelman Syndrome has been brilliant. Thank you!”
David TC Davies MP said, “I must admit this was the first time I had heard about Angelman Syndrome. It is a terribly sad diagnosis for those affected and their families.
“However, hope is on the horizon with the advancement of scientific research and work is underway to find a cure. It was an absolute pleasure to join Ivor and his parents on his charity fundraising challenge. This determined little boy is an inspiration to us all.”
Local councillors Richard John and Jayne McKenna said, “It was a real privilege for us to join Ivor, his family and the wider Catbrook community on his first walk around the village to raise awareness of Angelman Syndrome and to raise money for FAST.
“While this is a rare and limiting condition, there is hope with the rapid advancement of scientific research.
“Ivor did a fantastic job on his first walk around the village and we’d urge residents who see Ivor and his family out and about on a walk, please say hello or join the walk.
“Ivor’s last walk will be on Sunday 16 July at 10am from Catbrook village hall and all are welcome. The more the merrier!”
Readers can learn more about Angelman’s Syndrome here https://cureangelman.org.uk
Donations for Ivor’s walks can be made here: https://www.justgiving.com/page/sarah-washbrook-1684270030414