CURE ADOA FOUNDATION
The foundation
Mission
The Cure ADOA Foundation was founded in 2018, for and by ADOA(-plus) patients. Our mission is to be a platform to make scientific research financially possible, so that the treatment and cure of ADOA(-plus) is stimulated. To achieve this, we want to promote brand awareness nationally and internationally. Collaboration is crucial. We seek interaction with doctors, researchers, the pharmaceutical industry and patient organizations abroad.
With our foundation we also want to be a trusted place in the Netherlands to which every individual and every family affected by ADOA(-plus) can connect. A place where we can share knowledge, experiences, tips and support together. There will be at least one fellow-sufferer's day every year, where sharing experiences and obtaining information will be central.
Goals
- Raising money for scientific research to promote the treatment and cure of ADOA;
- Publicizing ADOA, nationally and internationally;
- Promote interaction between ADOA patients, physicians, researchers, pharmaceutical industry and international patient organizations. Also have a medical team draw up a plan for research;
- To be a trusted place for ADOA patients and their loved ones.
Due to the rare nature of the condition, we in the Netherlands are a small but active place for people with ADOA. Dominant optic atrophy affects many lives; not only the life of the patient, but also that of his loved ones. Through our efforts, we hope to bring attention to ADOA and raise awareness about the debilitating nature of this disease.
Medical Advisory Board
As Cure ADOA Foundation we have a medical advisory board:
drs. JAM van Everdingen
Eye Hospital Rotterdam
Ophthalmologist, general ophthalmology and neuro-ophthalmology
Dr. IFM de Coo
University of Maastricht
Pediatric neurologist, Coordinator NeMo Center of Expertise
prof. Dr. CJ Boon
Amsterdam UMC
Ophthalmologist, professor of ophthalmology and hereditary eye diseases
The board
From left to right: Maud van Gerwen (member), Hedy Smit – Wighers (treasurer), Lotte de Jonge (member), Gabriëlle den Hollander, Beijer (secretary), Kim Warink (vice-chairman), Sander Dikhoff (chairman).
Ambassador: Nina Warink
Nina is a content creator and has over 550.000 followers on Instagram alone. She also writes cookbooks, has her own bikini and clothing line and you may also know her from the Hunted VIPS programme. Nina did not just become an ambassador for our foundation. She herself does not have ADOA, but she does have several family members with this disease.
Nina wants to use her fame to create more awareness about ADOA. For example, she sells clothing, the proceeds of which go to ADOA for scientific research. In September 2022 she has an impressive one documentary made about ADOA.
ANBI status
As a foundation, we have the official ANBI status and are therefore a charity that can be donated with tax benefits. All donations are 100% reserved for funding research.
All costs are paid by the board members or financed through sponsorship in money or kind. The board members and the medical advisory board receive no remuneration. Below all relevant documents regarding the obligations associated with the ANBI status. Both the regular annual report of 2022 and the financial annual report of 2021 can be found below.
VSOP
As the Cure ADOA Foundation, we are a member of the VSOP (Association of Collaborating Parent and Patient Organizations). The VSOP is a partnership of approximately 60 patient organizations, often for conditions with a hereditary or congenital component. The VSOP focuses in general on genetic and biomedical research and policy, and in particular on the specific problems of rare disorders.
We can also be found via the website View of Zeldzaam. The Cure ADOA Foundation is listed as patient organization and ADOA is listed as rare condition.
