Making a Difference
Our mission
Raise money to bring to reality, the cure for CDD. To fundraise for a genetic cure for these disorders.
To support the families raising someone with complex needs in whatever way possible. Recognise and acknowledge this part of society still suffering ignorance and discrimination.
To identify product and service discrepancies affecting medically complex children and adults and find ways to have these areas addressed.
To develop products not yet existing anywhere for special needs such as continence and real food formulation for tube fed people. To help people in Australia access good nutrition when fed by a tube and to develop and supply this nutritional product to other countries not well supported in disability such as Sri Lanka and Phillipines.
Create awareness
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
Fundraiser for Research into a cure
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.
Education and Resources
Links to services and specialised resources to help newly diagnosed and anyone who needs to learn more or find another therapist to trial.