Twan Foundation
The Twan Foundation is founded on the 17th of December, 2013, in Ede and is registered in the trade register (KVK) with the number: 59461381
Adres data: Stichting Twan Foundation Beukenstuklaan 35, 3903 DN Veenendaal +316 – 12 14 70 34
Introduction
Twan Baas has the very rare disease Ataxia Telangiectasia. Worldwide there are few children with this disease. In the Netherlands there are only 15 children with Ataxia Telangiectasia. Thus far, no cure or medicines exist for this disease. International studies on Ataxia Telangiectasia are currently conducted. The studies are internationally coordinated as much as possible. This means that countries make common agreements about studies conducted per country. Results are mutually communicated as well.
Studies on A-T
The choice to found the Twan Foundation was not a difficult one; we had the urge to do something.
when you do nothing, nothing is going to chance
The Twan Foundation supports research on Ataxia Telangiectasia in the Netherlands.
This research is mainly executed at the Radboud University Medical Centre. This is in fact the hospital where Twan receives his treatment. We have great contact with de doctors and researchers at Radbout UMC and the cooperation goes well. We know that the money from the Twan Foundation go to the right place.
The Twan Foundation
Next to support for research, we organize meetings for families having a child with Ataxia Telangiectasia so they can meet each other. In these meetings, also doctors from the Radboud UMC may inform about their current research.
The Twan Foundation frequently functions as an ‘intermediary’. We help families who are just finding out that their child has Ataxia Telangiectasia. We also get regularly questions from abroad. Due to the informal and nice contact we have with the Radbout UMC, we often can refer these people to the right place.
Thanks to the help and donations from many people from the Netherlands, we are very glad with the results we’ve reached so far.
Perhaps we talk about a small influence, but we get a lot of energy from every euro donated! We hope to be able to be active for the Twan Foundation for a very long time so that ‘a stone can be moved in the river’.
Money allocation
There is a procedure in which it is described which steps have to be taken and which conditions have to be fulfilled to get financial support from the Twan Foundation
The Twan Foundation does not provide advances. Finances will be paid out as soon as the requested conditions are met.
Included in the procedure are the standard forms as well as the conditions. The conditions include the feedback about study results from researches to which the Twan Foudation participated financially, the maximum contribution made by the Twan Foundation, as well as mentioning the Twan Foudation in publications.
The Twan Foundation is also able to participate in the acquisition of co-financing.
Organigram of Twan Foundation
The Twan Foundation has five board members. Those board members are volunteers and the board gather four times per year. Reports are written after each meeting.
The board gets marketing and organization support from Virtueel Assistent Esther Krook.
During activities and events extra volunteers join us. It happens regularly that people want to organize meetings themselves. The Twan Foundation offers support when needed.
Do you want to have a part in the Twan Foundation. Your effort is always very appreciated and we gladly contact you.
The board
We have noticed that initiating actions and being busy with brand awareness for Ataxia Telangiectasia gives us energy. We are hoping for a breakthrough in the studies.
Beside we want to be visible and findable for other families with a child having Ataxia Telangiectasia. Often we noticed that we are able to connect people or to refer them to the right health care providers.
We also organize meeting days in collaboration with the Radboud UMC. Of course we can’t do this on our own, and the board of the Twan Foudnation gladly introduces itself.
Tim Rodenburg
Chairman
My name is Tim Rodenburg. My wife Anneke and I have two beautiful children whom we enjoy. For my job I am involved with people and construction.
Through my work I’ve gotten to know Rutger and Rianne; they needed to make changes to their home to improve Twan’s comfort living at home. Because of this, I delved into the disease Twan suffers from and this touched me deeply.
Therefore I’m committed to helping the Twan Foundation inform people about Ataxia - Telangiectasia and raise money for research.
Esther Krook
Secretary / Treasurer
My name is Esther Krook and I have been supporting the Twan Foundation as a Virtual Assistant for a few years now.Due to these activities I am increasingly involved with the Twan Foundation and the decision to join the board as secretary / treasurer was quickly made.
I hope to contribute even more to awareness for the Twan Foundation and thus more opportunities for research.
I am married, have 2 children and live in Putten.
My slogan is: Together you achieve more.
Rianne Kranendonk-Baas
Board member
Sjaak Kranendonk
Board member
Twan is our grandson. Before the doctors diagnosed him with Ataxia Telangiectasia, we had no knowledge about the existence of the disease. Afterwards you start to know more by searching the internet, reading about it and you have to draw the conclusion: there is no cure for this disease. That’s hard to process, especially for Rianne and Rutger. Aren’t they performing studies? They do, but the disease is so rare (about 15 children in the Netherlands). Moreover, there are few money available for research and that’s something you want to change, which is not possible when you are alone.
But together in a foundation, by means of actions and donations collecting money to make research possible: That’s the reason why I want to participate in the board of the Twan Foundation.
Rutger Baas
Board member
When your child is diagnoses with Ataxia Telangiectasia your world crashes and you feel powerless.
As Twan’s father I want to participate in the Twan Foundation to do whatever is needed to make Ataxia Telangiectasia research possible and help families having children with Ataxia Telangiectasia.
Mincke van Schuppen
Board member
Bertine Goudswaard - Toebes
In loving memory (10-7-1985 — 31-3-2017)
The Twan Foundation represents hope for me. It is heartbreaking to watch Twan going through all this, and with him his parents, family and friends. You can feel the pain with each of them, but because of the positive actions, the strength of Twan, his parents and the support from family and friends is inspiring. Children with Ataxia Telangiectasia can’t do the battle for more research themselves and deserve, as far as possible, to be children. I’m thankful to participate in the board to get more people involved for Twan (and other children) and against Ataxia Telangiectasia. Only together we can fight this battle!
