The policy
Below you will find the policy plan of the Twan Foundation
1. Introduction and objectives
preface
Twan Baas has the very rare disease Ataxia Telangiectasia (A-T). Few children worldwide have this disease. In the Netherlands there are about 15 children with A-T. Until now, no treatment for this disease is possible, drugs have not yet been developed. Research is being conducted into AT internationally, the studies are coordinated as much as possible; this means that countries make mutual agreements about the surveys that are carried out per country, and the results of those surveys are also mutually communicated.
There is an urgent need for more money for scientific research into treatment options for AT (including medicines). In addition, there is sometimes a need for supporting materials, for example in the field of playing and learning.
As parents of Twan Baas, we have taken the initiative to collect money in order to contribute to the financing of (scientific) research. The Twan Foundation was established for this purpose.
Goals:
- Making financial contributions to (scientific) research (national and international) on Ataxia Telangiectasia (A-T)
- Providing financial contributions for the acquisition of, for example, play, learning and other support materials for AT patients.
- To publicize this very rare disease
- Bringing families with a child with A-T into contact with each other where there is a need and if necessary. refer to the appropriate authorities
The foundation acquires its funds by organizing activities, as well as gifts, donations, bequests, proceeds from sponsorships, donations, etc.
2. The Twan Foundation
The Twan Foundation was founded on dd. December 17, 2013 in Ede and is registered in the trade register (KVK) under number: 59461381
Address details (including archive)
Twan Foundation
Beukenstuklaan 35
3903 DN Veenendaal
0318 - 30 15 59
06 - 12 14 70 34
Email: info@twanfoundation.nl
Internet: www.twanfoundation.nl
Facebook page: facebook.com/twanfoundation
The registration of Algemeen Nut Beogende Instelling (ANBI) has been applied for at the tax authorities.
Public accountability
The Twan Foundation publishes an annual social and financial annual report and publishes this via its own website and via social media.
The board
The board of the Twan Foundation consists of the following persons:
- Rianne Kranendonk-Baas, chairman;
- Simon van Diermen, treasurer;
- Samantha de Bruin, secretary
- Sjaak Kranendonk, board member;
- Rutger Baas, board member.
- Wilma van Roekel. board member
The board members perform their activities unpaid (voluntary work). Any expenses incurred can, if desired, be claimed against submission of evidence.
3. Multi-year perspective
The Twan Foundation wants to achieve its objectives by raising funds. We aim to acquire at least 10,000 euros annually and allocate these funds to activities that are in line with our objectives. Building capital is not a goal of the foundation. The aim is to allocate the collected funds annually as much as is reasonably possible.
The Twan Foundation organizes / facilitates at least 2 fundraising activities every year and also encourages sponsors and other initiators to organize activities that generate money for the Twan Foundation.
In principle, the Twan Foundation does not participate financially in activities organized by others for the benefit of the Twan Foundation. Any (pre) investments must be covered as much as possible by the organizers of sponsoring activities by means of sponsoring.
The board can provide organizational support for activities organized by third parties.
4. Activities by and for the benefit of the Twan Foundation
1. The Twan Foundation aims to devise and / or facilitate at least two sponsor campaigns every year.
For 2014, the following activities are already planned to raise funds:
May: Twan run by Simon, July: Nijmegen Four Days Marches promotion, September: Twan Foundation Tour, October Christmas cards promotion.
2. The website is kept up to date.
3. The Facebook page is kept up to date and a twitter account is created.
4. In addition to the digital media, PR material is being developed to promote the Twan Foundation.
The targets for 2015 will be set in the third quarter of 2014.
Allocation of funds
A plan will be developed in 2014 for the manner in which (procedure, standard forms, etc.) as well as the conditions (for example: feedback of the research results of studies, mention of the name of the Twan Foundation in publications,
maximale bijdrage) waaronder een financiële bijdrage kan worden toegekend. Stichting De Twan verstrekt in principe geen voorschotten. De geldmiddelen worden uitgekeerd zodra aan de gemaakte afspraken (zie de toekenning) is voldaan.
Stichting De Twan kan zich ook inzetten voor het verwerven van co-financiering.
Inrichting organisatie Twan Foundation
In 2014 wordt er gewerkt aan het ‘inrichten’ van de eigen organisatie. Dit onder andere in dat het bestuur houdt afspraken gaat maken over haar werkwijze, de taakverdeling, de vergaderorde, de archivering, de financiële administratie en verslaglegging / verantwoording, externe communicatie (o.a. social media), declareren en kosten, etc.
De gemaakte afspraken worden vastgelegd en gearchiveerd.
Stichting De Twan streeft er naar geen of minimale bureaukosten te maken.
5. Samenwerking en randvoorwaarden
Stichting De Twan houdt nauw contact met ATCP in de Verenigde Staten i.v.m. kennisoverdracht en besteding van middelen en eventueel (tips voor het) organiseren van sponsoractiviteiten.
Daarnaast houdt Stichting Twan ook nauw contact met het Radboud ziekenhuis in Nijmegen.
