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For Parents/Carers

So you finally have a diagnosis for your child!  What now?

We have all been in your shoes and some of us waited many years for our child's diagnosis.  After receiving this news you have probably quickly discovered that your healthcare professional has limited or no knowledge of this mutation and is unable to answer many of the questions you need answered.  Once the diagnosis has been made it can be just as isolating as before you had one.  As you will have found out there isn't a lot of information to be had on this genetic mutation.

As a community we collectively share information about our ‘Champs’ including the wide ranging characteristics, abilities and developmental milestones creating an informal online registry to enable parents/carers to utlilise this collective information to provide help, support and sense of belonging.

This website was set up to provide information but also to act as a link for parents to gain access to our Facebook community. If you would like to become part of our closed (private) group that has families whose children have the CHAMP1 diagnosis please click on the button below.  Please note you will be contacted by one of the admins of the group prior to being accepted.  They will ask you questions to ensure you have a family member affected with the gene.  This is a security check as I'm sure you will appreciate our children's online safety is paramount.  

To join our Facebook Group please complete the registration form then follow the link to join.  Please not you must complete the form before accessing the group.

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