There are more than 20 diagnosed children around Australia and, at last count, 7 in New Zealand. At 2021, there are still no specialised services and specialists available for our children. We set up this nonprofit organization to try and fill the gaps in care, knowledge, and inclusion for our children and all children born with this life limiting and complex rare genetic disorder, CDKL5
A cure date has been set for 2025. Not far at all. Australia has an important role to play in solving the puzzle of gene correction technology and specifically CDKL5 Deficiency Disorder. Rare genetic Epilepsy Awareness is important to understand so people will see the need to find a cure as soon as possible for this devastating diagnosis.
Links to services and specialised resources to help newly diagnosed and anyone who needs to learn more or find another therapist to trial.