OUR MISSION
Making A Difference
AFCR exists to raise money, and bring to reality the cure for CDD! To fundraise for a genetic cure for this disorder.
To support families raising children or adults with complex needs in whatever way possible. To recognise and acknowledge this part of society still suffering with ignorance and discrimination.
To identify both product and service discrepancies affecting medically complex people, and to find ways to have these areas addressed. To develop products not yet seen, nor existing anywhere else for special and complex 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/s to other countries not well supported in disability care.
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
Fundraise For Research And 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
Here are some links to help you understand more about CDD, because learning awareness and understanding are paramount!
