Angelman Syndrome Alliance (ASA)

Alliance on Science : An International Collaboration

The Background:

First International Conference on AS, Rotterdam October 2012

In 2012 the Nina Foundation invited every AS organisation they could find to Rotterdam to present their idea on working as an Alliance. The organisations that came to this International scientific meeting in Rotterdam, together with the scientists, were all asked to participate in 2 brainstorm sessions on HOW to create the most effective Alliance.

Legal work, May 2013

The NF wrote a memo on the most efficient and internationally effective way to work together. This memo was distributed to the organisations and subsequent changes were made which resulted in an effective Alliance agreement.

The first pioneers sign the Alliance, Rome October 2013

The agreement was sealed in Rome in October 2013. France, Italy, Belgium, Ireland, England and Nina Foundation signed and also offered the financial input to start the first call for scientific research.  Other groups are pending:, eg. PWAV, Japan and Germany. Link to the launch: Alliance is launched (you may need to translate this page)

agreed-to-work-together

We are united  and more countries are welcome to join. Just mail to info@nina-foundation.org and ask for the Alliance Agreement. It is written in English and explains the way we operate.

onbekend

The Nina Foundation was founded in the Netherlands (Europe) to help fund scientists and professionals to pursue further research on Angelman Syndrome: – Nina Foundation.

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The Goals of the Alliance 

For the first period of our cooperation the mutual goals are:

  • the joint funding of current research projects;
  • the joint funding of new research projects;
  • setting-up annual meetings of the scientific advisory board, combined with a biannual meeting with other scientists in related areas of expertise, as a new view on Angelman Syndrome may lead to promising new insights and projects;
  • setting-up a network of multiple scientists and parent organizations in order to be eligible for funding by (for instance) the European Union

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.

Paris October 2014

The next meeting is in Paris – 18th October 2014. 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?

You can join, donate or fund raise. If you need ideas on other ways to help, 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 info@ninafoundation.eu 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.

Warm regards, Betty Willemsen (Nina foundation)

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