We’ve all had quite the journey….
2021 – ROSAH Syndrome Community Network website created to support families
2019 – Leading teams from around the world, including one led by Professor Robyn Jamieson at CMRI, were the first to report together on the new syndrome and the gene which causes it, ALPK1, which is published in Genetics in Medicine
2017-18 – Oakes Foundation is formed by the White Family who had features of the ROSAH Syndrome. [Initial Funding to establish the Oakes Foundation came from the Young Family and Pet Stock.]
2013 – Oakes Trust awards a grant to Professor Jamieson
2012 – The White family find out the remaining children have early signs of the retinal condition
2011 – Oakes Trust is formed and starts raising funds for research into Retinal Blindness
2010 – The White family find out that one of their 3 children has an inherited eye condition, like his mother.