George is going to walk 21K between the 21st June & the 21st July to help raise funds for our DYRK1A meet up. His little brother Henry, was born with a 21Q deletion which includes missing the DYRK1A gene. We very much look forward to learning more about this gene that affects Henry’s life so much & meet others families we can relate to. 

Having a child with a rare chromosome disorder can be isolating and confusing. Having a community you can share information with and that understand is hugely beneficial. This meet up enables families to spend time together along with hearing from specialist speakers that can give more understanding regarding some of the medical aspects involved. The charity being able to assist with funding the event helps ensure that as many families as possible are able to benefit from this experience.