The CHAMP1 Research Foundation is holding the second family conference in Florida on the 21st-23rd October 2022.

My son Calum is the only person in Scotland diagnosed with the condition. There are just over 100 people in the world diagnosed with CHAMP1. For Calum having CHAMP1 means he has a severe speech impairment and will need 1:1 support for the rest of his life. By attending the Conference this will allow us to meet up with Researchers over in America. Work is already underway to look into the gene and to find out if there could be any potential therapies to improve our children's lives.

My cousin Del and brother Andy are doing a sponsored kayak for my boy. It will start on Friday 8th July over two days as it is 55 miles. They will kayak from Aberfoyle to Kincardine Bridge where we will be waiting for them to come along the Forth. If we don't meet the target that would allow us to get to Florida then all funds would be donated to the CHAMP1 Research Foundation: www.champ1foundation.org