My 3 year old son Ivor was diagnosed with Angelman Syndrome just before Christmas last year.

This is a rare neurogenetic disorder (affecting about 1 in 15,000) causing 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.  

But there is hope with the advancement of scientific research.

Scientists believe that Angelman Syndrome has the potential for being cured and FAST (Foundation for Angelman Syndrome Therapeutics) - a non-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.  

Here is a link to the charity's website if you're interested in finding out more:

https://cureangelman.org.uk

To increase awareness of Angelman Syndrome and to raise money to support FAST, Ivor is going to walk a 1km lap around our village of Catbrook every day for a month.

This will be a real challenge for Ivor as he hasn't long been able to walk any real distance, and he won't be able to tell me what he thinks - but we'll take it slowly together, and I'll make sure he keeps a big smile on his face!

We will start on Friday 16 June 2023 and finish on Sunday 16 July 2023.

Please don't feel you have to donate; by simply reading this message I hope that you have learnt a little about Ivor and Angelman Syndrome.

Thank you!