We are thrilled to announce our official affiliate foundation in Australia! The FOXG1 Research Foundation Australia is led by Steve Hille, father to beautiful two year old Mina.
A statement from Steve Hille…
It is my belief that the job of every parent is to make themselves redundant and that their kids can have independence at the appropriate time in their lives. When we learned about our Mina’s diagnosis it was becoming clearer and clearer that this was not going to be our reality. This is a devastating feeling for a parent.
My life, to this point, has been full of good luck and being in the right place at the right time to align myself with certain situations that have proved to be very beneficial to myself and my family and it’s not lost on me that this is largely due to the incredible luck of being born and raised so well in such an amazing country. We are also very blessed to have such incredible health and social services systems here in Australia.
My priority is now to work with our international teams on the Path to a cure for FOXG1 syndrome and other related diseases. It is truly awesome in every sense of the word the things that I have learned since becoming involved with the FOXG1 Research Foundation. Here is a short list of some of the things that they have accomplished so far:
Built a world-renown Science Team that includes a consortium of experts in academia and industry working towards disease-modifying therapies and ultimately a cure.
Developed and studying critical assets including animal models and cellular models based on every category of FOXG1 mutations to accelerate the research and trials. See all Research Projects here.
Built the biobank to help the researchers grow pluripotent stem cells to help speed up the research per mutation.
Built the FOXG1 Patient Data center that includes the robust patient registry and now the new digital natural history study supported by the Chan Zuckerberg initiative.
Attracted several biotech companies to invest in FOXG1 syndrome for gene therapy, antisense therapy, and more.
Fundraise a significant amount to make all these things happen.
It is my intention that FOXG1 Research Foundation Australia will support in every way possible and work extremely closely with the international teams. Until now in Australia there has only really been one serious researcher into FOXG1 and that work is now finished. While most of the work is happening in the United States and Europe, we will be assisting mainly from a fundraising perspective, but also helping with projects and identifying opportunities in Australia to advance the science and feed that back into the international teams.
We have an unbelievable team and we are all eager and excited to work on the path to a cure for FOXG1 syndrome together.
