Making a difference in BPAN research- Angus' story

Like most parents, David and Edwina only want the best for their child, but they have unfortunately had to fight a lot harder than the average family. 

Their son, Angus, has a rare, life-threatening genetic disorder, for which scientists are desperately seeking a better understanding and potential treatments. 

David fears that he will never hear his son call him "Dad". Angus has an extremely rare and little-understood genetic brain disorder called BPAN (beta-propeller protein-associated neurodegeneration). 

David and his wife, Edwina, first became concerned that something was wrong when Angus began missing developmental milestones, like rolling over and sitting. 

Initially, BPAN appears as a developmental delay. Many children with BPAN, including Angus, do not acquire speech, for example. What frightens David most about Angus' condition is that BPAN will inevitably accelerate. Should that day come, ahead of a proven treatment, Angus' health would decline rapidly, losing every skill he has mastered, from sitting to eating and swallowing. 

Time is therefore critical: a cure or a treatment needs to be found for Angus and other children like him before they reach their late teens or early 20s when the deterioration starts. 

That is why raising funds to support scientific research into BPAN is crucial. David has become active in raising awareness and support for BPAN research, having raised over $400,000. He and Edwina believe BPAN is a mystery that Australia's top medical minds can crack, and they continue to do all they can to support BPAN research.  

To learn more or to make a donation, please visit: https://www.mcri.edu.au/bpandonate