Little more than 18 months ago, Jonathan and I received the news that changed our world dramatically. Our beautiful daughter Ruby received a diagnosis of BPAN, an incurable rare brain disorder caused by a spelling mistake on her WDR45 gene and more elaborately known as Beta-Propeller Protein-Associated Neuro Degeneration.
Sadly, this condition causes a deterioration in late adolescence or her early 20s and Ruby will experience Parkinsons, Dystonia, Vision loss and Alzheimers. At this stage there is no treatment or cure.
On Thursday last week Ruby and I flew to Melbourne for the launch of an exciting and cutting edge new research project at the Murdoch Children’s Research Institute that is exploring treatment options for BPAN.
This research has the capacity to benefit many of the neurological disorders that are causing so much pain for so many, Motor Neurone Disease, Parkinson’s Disease and many, many others. As a group we need to find another $300,000 to fund year 2 and year 3 of this research program – it is hoped that at the conclusion of this initial period, the advances made will allow for greater government support and support from the private sector.
We genuinely believe that the team and resources at the MCRI are optimally placed to make these breakthroughs – we believe that this team will succeed if we can secure the support they need financially.
Further information can be accessed here: https://www.mcri.edu.au/
Donations can be made here: http://bit.ly/2rOoNyT
We would be so grateful for any donation to fund the research.
ALL DONATIONS WILL GO DIRECTLY TO THE MCRI TO FUND BPAN RESEARCH.
Please feel you can share this post - whilst there is enormous vulnerability in sharing our little one with this world, your reach may be the only way we achieve a breakthrough.
If you’re comfortable, please let us know if you donate so we can thank you personally.
I do plan to do some fundraising initiatives for the research and if anyone has any experience or advice in this area I would be grateful for your help.
#bpan #bpanwarriors #mcri #murdochchildrens #raceforruby