Angelman Today January / February edition 2014 | Page 19
Reasons for choosing
FEBRUARY 15th:
The number 15 relates to
the affected 15th
chromosome.
February is International
Rare Disease month. (RDD
falls on Feb 28/29th)
Background: As we all prepare for a new start in 2014, ideas and plans are being generated by individual
organizations around the world, to celebrate International Angelman Day—our community's global day of
awareness. This young initiative is the result of a ‘virtual ‘group of organizations; an informal ‘collective’
that demonstrates a spirit of global unity and collaborative support.
Through 2012, national reps were gathered from around the world for this collective. 23 organizations
voted for a suitable date and logo, and by the time the inaugural day arrived, 35 organizations were on
board. The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations, support groups, parents, medical experts and researchers.
It is also quite sweet and
appropriate that it is so
close to Valentine’s Day,
because the affectionate
demeanour so characteristic
of this syndrome, displays
such genuine, unconditional
love.
Link to world map showing
the 35 Organizations that
participated in IAD 2013
Organizations are invited to work together for our common cause: together we have a stronger voice;
together we have more resources to share; together we can accelerate AS research. International
Angelman Day reflects this camaraderie and promotes all that is Angelman Syndrome—the bad side and
the good. It serves to generate much needed funds, strengthen ties across borders, and open doors to
future collaborations within our AS community.
A WEBSITE is being constructed
and will be launched soon. Stay
updated by visiting the official IAD
facebook PAGE:
The purpose of INTERNATIONAL ANGELMAN DAY is to:
h t t ps : / / w w w . f ac e b o o k. c o m/
InternationalAngelmanDay
Raise awareness worldwide of the condition
Mobilise people to action & encourage fundraising for the
organisation/s in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
Things you can do for International Angelman Day:
Raise awareness:
Spread the word about AS in your own community—at
schools, churches, workplaces, sports/social groups,
“Anything anyone can
etc. Hold fun events that could generate media interest.
do to raise awareness is
Contact your local papers to report on your events.
greatly appreciated.
Display the logo on T-shirts, button badges, caps, etc.
Hand out informative brochures about your own local AS
No gesture too small.
organisations and support groups.
No such thing as the
Fundraise:
insignificant
Raise funds for a registered organisation you wish to
support—for AS research or education resources.
word or deed.”
Be vigilant with good fundraising ethics to protect the
- Colin Farrell
honour of this venture.
++++++++
Share ideas and discussions in
the informal facebook GROUP :
h t t ps : / / w w w . f ac e b o o k. c o m/
groups/112026595597947/
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here:
angelmannetwork.internationalnetworks/
+++++++
Int ernational Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community.