Following the amazing news that the charity Genetic Disorders UK have awarded us a grant, a couple of our R(20) families have shared their personal stories to helped raise awareness ahead of Jeans for Genes Day.
Jeans for Genes Day is a fundraising event organised by Genetic Disorders UK which is on the 23rd September.
The grant will be used for a family conference where attendees can hear talks from specialists and attend workshops and discussion groups. Look out for more details on this in future posts.
A big thank you to Tilly, Callum and their families for making this effort. We also are very grateful to both the Sunday Post and Burton Mail for writing these articles. If you haven’t seen or read them yet, the links to both articles are below.