It’s our aim to have a CDKL5 Nurse Specialist at each Centre. We believe this will offer the level of care and support our children need and that support will continue for our families once they leave the clinic and return home. We understand that it will not be possible for all families to access a Centre, so it is essential that CDKL5 families, in the UK and Europe, have a single point of contact should they need advice, support or someone to talk to about their child.
As yet we do not have sufficient funding in place to support these posts. So our aim is to maximise our fundraising efforts to raise enough money to fund these roles. If you would like to help us achieve our aim you can fundraise for CDKL5 UK simply visit www.justgiving.com/cdkl5uk You can take part in an event and set up a fundraising page to collect your sponsorship. Alternatively, you can make a one-off donation or set up a regular monthly gift. Any donation however big or small will go towards helping us achieve our goal of funding the CDKL5 Nurse Specialist posts.
We firmly believe these Centre’s of Excellence will give our children the care and support they need. We hope you will help us in making this goal a reality.
If you have any questions or wish to discuss further then contact our Chairperson, Carol-Anne Partridge. carolanne@cdkl5uk.org.
We are delighted to be able to share news about our Centres of Excellence. Royal Bristol Children’s Hospital has been announced as the first Centre in the UK. (More info to follow from CAP)
