Angelman Today January / February edition 2014 | Page 36

MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members. Different events have been organised with the aim of raising awareness and funds
for research. We have equally participated in a large number of events or activities organised by
other associations and institutions, where we helped setting the tables for the merchandise selling in
order to raise funds.
Our main fund raising campaigns:
1.- Old mobile phone collection for recycling them for trade.
That was a very successful initiative in which over 68,000 mobile
phones were collected in a year’s time.
2.- Handmade product selling produced by the mothers members of the association, such as bracelets, necklaces, earrings and
other jewlery but also biscuits and different items.
3.- Awareness rubber wristband selling.
Moreover, a large number of other events have been carried out
during the last year (bazaars, sport events, charity events and
festivals, etc.), especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day,
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics).
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research.
This way, the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr.
Edwin Weeber’s research. Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital.
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial.
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr. Ugo
Mayor in the CIC Biogune Center.

Main events 2012 and 2013

PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome. We are
aiming to host another professional congress in
early 2014. This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists, speech therapists, psychomotor
specialists, special education teachers, etc.) to help
them with how to deal with the management of
children affected with this syndrome.