Policy Plan 2022
A. GENERAL
1. Objective and activities to be carried out by the Foundation: To promote health care in Indonesia, particularly in (but not limited to) Java, and especially of (but not limited to) unborn and newborn children. The purpose of the Foundation is entirely focused on public benefit (public health) through improvement of diagnosis, therapy and prevention of prevalent diseases with high morbidity and mortality (public benefit) in particular (but not limited to) disorders in mother and child before, during and after birth. The Foundation seeks to achieve this through the transfer and implementation of modern molecular DNA and RNA techniques that are currently standard in the Western world.
The Foundation seeks to achieve its goals through: a. collaboration with university centers; b. (further) training activities; c. exchange of expertise; d. establishing databases including banks of tissues, cells and body fluids; e. maintaining contact with local authorities in Indonesia, including on Java; f. implementation of modern molecular techniques in Indonesia, including on Java; g. all other legal means which are (or may be) conducive to the goal.
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2. Acquisition of income: The assets of the Foundation shall consist of: a. subsidies and donations; b. acquisitions by virtue of a bequest or inheritance; c. fees for services provided by the Foundation; d. all other acquisitions and income.
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3. ANBI status: The foundation is completely focused on the general benefit (see statutes). The foundation serves the public interest with all its activities (see 1). The institution has no profit motive with all its activities that serve the common good. The institution and the people directly involved in the institution meet the integrity requirements. No natural or legal person disposes of the institution's assets as if they were their own. Directors do not have a majority control of the institution's assets. The institution does not hold more assets than reasonably necessary for the institution's work. Remuneration for policy makers is limited to an expense allowance or minimal attendance fees. Management expenses are limited to maintaining the website, bank account and written correspondence. Money remaining after the dissolution of the institution is spent on an ANBI, or a foreign institution that is at least 90% dedicated to public benefit.
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B. SPECIFIC
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4. Strategy: In Indonesia, 61% of low birth weight newborns die within 90 days of birth. The absence in Indonesia of facilities during and after pregnancy, as standard in the Netherlands, are the main cause of this. The foundation wants to remedy this by transferring and implementing modern molecular diagnostics as applied and/or developed in the Netherlands for early diagnosis of cause and complications of low birth weight. This is done in collaboration with academic centers in those parts of Indonesia where the clinical need is the highest, i.e. Java, the most densely populated island of Indonesia.
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5. Current situation: The board of the foundation was instrumental in the development and implementation of the NIPT test in the Netherlands. The NIPT (Non-Invasive Prenatal Test) test is currently standard in prenatal screening in the Netherlands. In the NIPT test, hereditary material (DNA) of the child (placenta) as present in the blood of the pregnant woman is analysed in a safe and reliable manner for the presence of genetic abnormalities. Based on this expertise, knowledge and experience, the foundation wants to make the next step: analysis of the RNA instead of the DNA (the ‘tuRNAround' project). In Indonesia, 61% of low birth weight babies die within 90 days of birth. However, growth retardation cannot be diagnosed from the DNA in the mother's blood. Analysis of the activity of the placenta is needed. This activity is read by means of the RNA. This can be analysed safely (non-invasively) in plasma from the pregnant woman or in the placenta after birth. By transferring the techniques available for this to Indonesia, based on clinical need, the percentage of low birth weight babies that die within 90 days of birth can be greatly reduced. This is the main goal of our foundation. In time, this improvement in early diagnosis should be permanent in Indonesia without the intervention of the foundation.
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6. Activities of the organisation: The concrete and primary work goal of the foundation in the period 2022 (Q3 and Q4) is: through collaboration with the Universitas Gadjah Mada in Yogyakarta to establish molecular early diagnosis of growth retardation and related pregnancy complications during week 10-14 of pregnancy. The approach to be used will be the analysis of an informative class of stable biomarkers, called circular RNA. The method to be used will consist of specific and quantitative techniques (RT-qPCR), either targeted (specific biomarkers) or genome wide ('big data'). The outcome of the analysis during early pregnancy will then be checked for specificity and reliability at the end of pregnancy against clinical data. This 'delay' between analysis and validation is approximately 30 weeks. However, the high birth rate in Indonesia guarantees that the inclusion period required for the required numbers of patients and controls will be limited and obtaining the required number will be faster than in the Netherlands. The added value of this approach is that in principle, if successful, the same diagnostic route can be used for (early) diagnosis of diseases other than growth retardation by analysing the same class of biomarkers (circular RNA) in plasma from patients with other diseases. For example: cardiovascular disease, cancer, and neurodegenerative diseases. In this way the knife cuts both ways: on the one hand we increase public health in Indonesia, on the other hand insights obtained in Indonesia can flow back to and benefit medical care in the Netherlands.
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7. Finances: The funds obtained from donations and other income are used exclusively for the above activities. The foundation is a non-profit foundation. All activities of the board and others involved are unpaid. The annual costs of the foundation are limited to the costs of the website (mandatory for foundations with an ANBI status), the business bank account and correspondence. The remaining funds (almost 100%) are spent on the purchase of resources (such as equipment and consumables) that are needed locally and/or are absent in Indonesia. The foundation aims that the deployment of analytical and medical staff in Indonesia takes place with 'closed' grants. That is, the costs for this group are borne by the relevant departments or agencies in which these individuals are employed.
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8. Risk analysis: The Foundation considers the probability that we succeed in our goal within the set period to be high for the following reasons. a. The Board has years of experience and knowledge with regard to the methods to be set up and has already successfully proven this in the Netherlands, b. The Board has ongoing working contacts with various academic centers in Indonesia, c. These academic centers meet the minimum requirements for a guaranteed transition to modern molecular technology, d. The academic centers involved have 'Early Development and Growth Disorders' as a spearhead of research and medical care, e. The academic centers involved have a need for new technology based on RNA markers and have expressed their commitment to this, f. The board members are familiar with the way in which goals can (or cannot) be achieved in Indonesia, g. The agreements to be made about what should happen, on what period and where the funds made available by the Foundation should be spent are recorded in writing, h. The progress will be monitored through teleconferences between the stakeholders in Indonesia and the Netherlands, and working visits to Indonesia.
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9. Communication: Progress of the mission of the foundation takes place through frequent updates of the website of the foundation (www.inetaaryanistichting.org), newsletters and personal contact via Email. The latter for those persons who have indicated this method of communication as such as a preference, alternative or addition.
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10. Annual Report: At the end of each calendar year the annual report will be available through the website. In addition to a summary of the results achieved, this will include a financial account of the income and expenditure with a specification of how the money was spent.
11. Budget: The budget for the founding year 2022 is estimated at 84K EURO. This concerns the purchase of consumables and (peripheral) equipment to be spent and used in Indonesia, location Universitas Gadjah Mada, Yogyakarta.
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C. INFO
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- Board: prof dr em CBM Oudejans, chairman; dr E Sistermans, secretary; B. Rookhuijzen, treasurer.
- CoC 85776785
- RSIN 863738163
- Established: 14 March 2022
- Contact: Ineta Aryani Foundation, Bertha von Suttnerlaan 33, 1187 SR, Amstelveen, The Netherlands
- Email: info@inetaaryanistichting.org
- Website: www.inetaaryanistichting.org