GC4K was conceived by two parents, desperate to help their daughter who was diagnosed with a neurodegenerative disease that had no treatment pathway or hope. What has followed is a focused, consumer-led initiative that aims to address the lack of fundamental knowledge of SPG56, then use the knowledge created to discover and develop a drug and gene therapy to treat the disease.
Importantly, this research program has the potential for broad impact, having a replicable framework for other forms of HSP, while building capacity to treat similar CNS disorders (or ‘other neurodegenerative’ disorders) with gene therapy.
GC4K is leading promising genetic research that could not only cure SPG56, but create a replicable framework that paves the way to develop treatments for some of the 7,000 other genetic diseases in the world.
GC4K’s first mission – to develop a drug treatment and gene therapy for SPG56 – has so far seen the establishment of a research program involving collaboration between world-leading researchers internationally, bringing together vital pieces of the scientific puzzle to demonstrate a viable pathway to developing therapeutics for SPG56. Such a pathway will likely help streamline the process for other diseases.
The charity’s commitment to furthering knowledge to benefit genetic research drives them to share their learnings and experiences from the research to this end. GC4K is also committed to building understanding and awareness of genetic/rare diseases, with the Whitrod family sharing their personal experience of a rare disease to seek better recognition, funding and support for rare diseases in Australia.
GC4K has exceeded all expectations in their fundraising efforts to finance this vital research work, as a demonstration of their effectiveness in communications. This defining strength has seen GC4K advance connections with families living with SPG56 around the globe. Using open communication about vital research, GC4K continues to engage media to raise awareness of their mission, and coordinate world class researchers and medical research institutes to conduct collaborative research producing evidence-based results. Communication is key and GC4K is an open book, ready to talk, learn, share and produce results to benefit the rare disease community globally.
Meet our Board Members
GC4K’s Board is run by dedicated, professional volunteers who meet regularly to steer the foundation forward and effectively allocate every donation into results-driven research projects. Your ongoing support accelerates the discovery of drug treatments and gene therapy research, and enables the GC4K Board to fund new therapeutic discoveries to directly help sufferers of rare genetic diseases.
Becky Hargrove
Marketing
David Whitrod
Membership
Chris Whitrod
Advocacy
Angie Reeve
Grant Funding
Golden Whitrod
Media and PR
Robert Turner
Treasury
Jonathan Smith
Secretariat
Emily Lucas
Governance
Read our Genetic Cures for Kids Inc. Annual information statement →