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Thursday, 4 April 2019
Page: 14906

Pantothenate Kinase-Associated Neurodegeneration

This petition is for the cure of pantothenate kinase associated neurodegeneration PKAN Classic. It's rare and fatal. Neurodegeneration with brain iron accumulation (NBIA). Children with NBIA are affected in Australia with a range of subtypes, Includes BPAN. There is 12 known cases of BKAN in Australia. There are 4 Known cases of PKAN classic in Australia, the numbers are climbing. PKAN affects about one in three million children. The average life span is ten years old. We draw the attention of the house: Bring the cure, Pkan to Australia and for all subtypes of NBIA. A cure for Miller O'flynn, Jordan Trnka and to end the suffering for our children. The head of Palliative care at the Queensland Children's Hospital can't treat this rare condition without the cure. Main presenting features are limb dystonia and spasticity, significant loss of eye sight, speech, tube feed, ability to walk, ability to move unaided and then the loss of another child like Sophia Knights aged seven years two weeks.

We therefore request the house: To take action and make contact with Dr Susan HayFlick of the nbiacure.org and work with regulatory authorities to help receive final approval from the FDA for our clinical trial to begin in Australia, allowing the cure CoA-Z to be brought into Australia and give life back to Miller O'flynn and Jordan Trnka. Give a cure to the Doctors who treat these current children and to save the future children.

from 108 citizens (Petition No. PN0405)