Establishment of OOG Oog Onderzoek Genootschap (Eye Research Association)
11 september 2023
On the 11th September 2023 Oog Onderzoek Genootschap – OOG (Eye Research Association) was established with the Amsterdam UMC Foundation. This labelled fund will help finance research into innovatory treatments such as gen therapy, with the specific goal : preventing blindness in children. By initiating this fund, OOG, the initiators want to speed up this pioneer research.
The initiators of OOG commit to raising a substantial amount for research that will prevent blindness in children. You can find more information about the OOG fund and how you can contribute financially or as an organizer at www.oog-genootschap.nl.
The idea for OOG started about 2 years ago. The entrepreneur, and eye patient, Rob Bruins, together with his eye doctor Prof. Dr. Camiel Boon, were discussing the latest developments in eye disease research. As Bruins understood it, the research necessary to develop new treatments, especially relating to gen therapy, were difficult to finance due to their experimental nature. However Bruins saw possibilities. He approached his extensive network in order to promote this important research.
He came into contact with Dave and Lieneke Hogervorst, whose 3 daughters have a genetic eye disorder. These very motivated parents organized the initial Walk4Light campaign, that successfully raised €43.000,-. This was a first large donation for gen therapy treatments.
Walk4Light inspired others
Sponsored walks are made in the dark, to draw attention to the need for research for gen therapy treatments for (night)blindness and this way raise funds. Everyone involved has the same goal: preventing blindness in children with gen therapy treatment. Each year around 100 children are diagnosed with a genetic eye disorder. The son of Thomas and Lianne Rikhof from Reutum was diagnosed with a genetic eye disorder 3 years ago. They organized a Walk4Light in March 2023 with tremendous success. Furthermore they organized a “Glazen huis” event (song request following donation), a lotery and an auction, with a total amount of €131.000,- raised! A Walk4Light is organized by families with children who have an hereditary eye disease.
One million Euro’s yearly
The association OOG has realised an amount of €270.000,- in donations over the past 2 years, a modest begin. The initiators strive to realise donations yearly of 1 million Euro’s for the research of Prof. Camiel Boon and Prof. Arthur Bergen. In order to acheive this, the Walk4Light will be continued nationally, and other fund raising 4Light events initiated. Furthermore the OOG Association strives to interest people to commit to an annual donation of a minimum of €1.000,- over a longer period of time. This way the research will have a solid financial base and create a community of commited people, where knowledge and experience can be shared. Boon “This research is so difficult to finance because it is a relatively rare field of disorders. More finance means more research into innovatory treatments such as gen therapy for hereditary eye diseases. With these treatments we can prevent blindness in children.”
Registration OOG signatures - Photo 11th September 2023 (from left to right):
Prof. dr. Arthur Bergen, Amsterdam UMC
Prof. dr. Camiel Boon, Amsterdam UMC
Rob Bruins, initiator OOG
Pelagia de Wild, director Amsterdam UMC Foundation
Dave Hogervorst, initiator OOG