Angelman Today January / February edition 2014 | Page 43

Alliance on Science Angelman Syndrome
A short tale on how we got united
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.

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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:
• 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
January / February 2014