Alliance on Science Angelman Syndrome
By Betty Willemsen, Founder of Nina Foundation
You see Tweets and Facebook messages on one of the most exiting achievements; the Alliance on Science is born. How is this accomplished and how does it work? I guess you even wonder how to participate?
First International Conference on AS, Rotterdam October 2012
In 2012 the Nina Foundation (NF) invited every AS organization they could find to Rotterdam to present their idea on working as an Alliance. I invited each one personally so I do know the efforts I have made to reach people from, New Zeeland, Australia, Japan, USA, Canada, Israel, Argentina, Spain, Denmark, Sweden, Finland, Ireland, Italy, France, Germany, etcetera etcetera. But not all replied, so we send a second letter and a third, sometimes through different channels.
The organizations could make it to this International scientific meeting in Rotterdam, together with an impressive crowd of scientists, were all asked to participate in 2 brainstorm sessions on HOW to create the most effective Alliance.
All the remarks were taken seriously and a questionnaire was developed to further investigate the possibilities and weaknesses (!).
Legal work, May 2013
Then the NF wrote a memo on the most efficient and internationally effective way to work together. We wanted no costs and we needed to avoid the tax problems that some countries encounter when participating in a larger initiative. And above all, we needed to work as equals, as a community and without creating confusion for parents.
This memo has been spread to the organizations that had made it clear to be interested. And they got a few months to react to this memo, so eventually a lot of changes were made. And now there is a wonderful, simple and effective Alliance thanks to all the good input that we received.
The first pioneers sign the Alliance, Rome October 2013
In October 2013 we agreed to come to Rome during the international conference set by ORSA, the Italian parent organization. There we sealed the agreement with a group of starters after long and intense meetings. France, Italy, Belgium, Ireland, England and Nina Foundation signed and all offered the financial input to start the first call for scientific research. The other organizations also agreed to join and were sorting out if they could immediately participate with money or better do this next year, 2014. For example PWAV, Japan and Germany. This means that you can still join if your country does not have a participating parent organization yet!
Goals of the Alliance on Science For the first period of our cooperation the mutual goals are:
How it works
In relation to the project-funding process, these are the steps (per call):
Each country presents one parent organization as their representative to participate in the Alliance.
That organization combines the funding created in their country and labels it with the destination ‘Funding Alliance on Science’.
After determination by the parent organizations of the amount of funds they have available for joint funding of research projects they sign the Alliance agreement that states the wish to make funds available and the amount of funds which will be available per the moment the grant(s) is (are) awarded.
Then the scientific advisory board sets up a call in which they include the most important cornerstones on research.
The first stage of application period starts: application by sending in two-pagers on research ideas.
Then the second stage of application period starts: on the basis of the aforementioned assessment the European scientific advisory board invites one or more applications to send in a more detailed application.
Eventually those detailed applications endure assessment by the scientific advisory board and they draw-up a ranking of the applications which are eligible for funding.
Now the participating parent organizations come in play and decide which of the ranked research projects are awarded a grant.
And then we draw-up separate funding agreements between the relevant researchers and each of the participating parent organizations with respect to their part of the funds connected with the awarded grant.
The funding goes from the parent organization directly to the scientist. There is no bank account in between to park all funding from participating countries.
Whom does what? The parent organizations keep everyone in their country informed and pays their part of the funding to the scientist.
The scientific board is in charge of the calls, assessments, reports and evaluations.The NF does most of the work necessary like communication between parties, administration and reports.
Here we go, Paris October 2014
The next meeting is in Paris 2014, October. Have a look at their website for more information. They also ask for financial help in organizing the event. Perhaps you can think about this? In Paris the scientific call for projects will have selected a few scientists to give a presentation to the group about their idea.
What can you do?
After reading this, you might get exited and wanting to help. And you can!
You can join, donate or fund raise, there are countless ways you can help. If you need ideas please contact the parent organization in your country or the Nina Foundation.
For legal information on the alliance you can directly get information from Martijn van Steensel who works at the legal firm Loyens & Loeff. They handle, on a completely voluntary basis, all the legal work and donations to the Nina Foundation. Mail firstname.lastname@example.org ask for the Alliance Agreement (in English) and you can mail us all your questions.
We are united 😉 and more countries are welcome to join.
Wish you a great 2014. Super exiting!