Establishment of OOG, the Eye Research Association
11 september 2023
On the 11th September 2023, the Oog Onderzoek Genootschap – OOG / EYE Research Association was established in collaboration with the Amsterdam UMC Foundation. This specific fund will help finance research into innovative treatments such as gene therapy for rare eye diseases, with the specific goal: to prevent blindness in children. By initiating this fund, the initiators want to speed up this pioneering research.
The initiators of OOG commit to raising a substantial amount for research aimed to 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.
Starting the Initiative
The idea for the EYE Research Association, OOG, started about several 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. It became clear that the research necessary to develop new treatments, especially relating to gene therapy, were difficult to finance due to their experimental nature. However, Rob 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 the genetic eye disorder retinitis pigmentosa (RP). These very motivated parents organized the initial Walk4Light campaign, that successfully raised € 43.000. This was the first kickstart for funding of gene therapy research via the Amsterdam UMC Foundation.
Walk4Light inspired others
A Walk4Light is a sponsored walk in the dark, to draw attention to and raise funds for research for gene therapy treatments for genetic eye diseases such as retinitis pigmentosa. Everyone involved has the same goal: preventing blindness in children. Each year, around 100 children are diagnosed with a genetic eye disorder. The son of Thomas and Lianne Rikhof from Reutum, the Netherlands, 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 lottery and an auction, raising a total amount of €131.000 for research!
One million Euro’s yearly
The OOG / EYE Research Association has an amount of €270.000,- in donations over the past 2 years, as a good start. The initiators strive to raise 1 million euros for the research on solving blindness in children with genetic eye diseases, by the group of Prof. Camiel Boon and Prof. Arthur Bergen in Amsterdam UMC. In order to achieve this, the Walk4Light will be continued nationally, and other fund raising ‘4Light events will be initiated. Furthermore the OOG / EYE Research Association aims 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 committed people, where knowledge and experience can be shared. Prof. Boon: “This research is so difficult to finance because it is a relatively rare group of disorders. Still, these diseases affect several millions of people worldwide. More finance means more research into innovative treatments such as gene therapy for hereditary eye diseases. With these treatments we can prevent blindness in children.”
Contact
Jacqueline Cleton, public relations manager Amsterdam UMC Foundation via j.m.cleton@amsterdamumc.nl of 020-5661776
Rob Bruins, initiator via
rob@oog-genootschap.nl of 06-51396718
Registration OOG signatures - Photo 11th September 2023 (from left to right):
Prof. dr. Arthur Bergen, Professor of Complex Ophthalmogenetics, Amsterdam UMC
Prof. dr. Camiel Boon, Professor of Ophthalmology and Clinical Ophthalmogenetics, Amsterdam UMC
Rob Bruins, initiator OOG
Dave Hogervorst, initiator OOG
Pelagia de Wild, director Amsterdam UMC Foundation