Angelman Today November / December edition 2013 | Page 31

www.angelmannetwork.com

TAN trustees: Gemma, Ursula and
Nadine with Mary Louise Bertram

Special points of
interest:
Kiwis in Sydney
? Connecting Families,
Specialists & Researchers
The Global Picture
? Where to now…?

Above: TAN Cultural Advisors: Keith
Henderson, Sivao & Johno Winther
with Ursula and Nadine.

Kiwis in Sydney
In early October, seven
families and two pediatric
specialists from New Zealand
arrived in Sydney, Australia
(only a 3 hours flight from
Auckland), to attend the
International Angelman Syndrome Conference. This
event also celebrated the
20th anniversary of the ASA
organization and of the establishment of the Angelman
Clinic in Sydney. There was
clearly a lot to celebrate!
Three trustees from The
Angelman Network (TAN)
Trust attended: Ursula Cranmer (Chair), Nadine Henderson (Secretary) and Gemma
Bradburn; both the latter with
new babies on their hips. Our
Cultural Advisors, Sivao and
Johno Winthers and Keith
Henderson, as well as additional families from across
NZ, were also present
The weekend proved to be a
first class event and presentations by Prof Ed Weeber,
Prof Bernard Dan, Dr Robert
Leitner, Mary-Louise Bertram
and Meagan Cross, were
highlights for our NZ families;
as was meeting Maria, an
angel who just turned 70 !

Above: Liz and Anne cut the ASA
20th Anniversary cake!
Below: Ursula meets Maria (70yrs)

Prof Dan, Prof Weeber, Mary-Louise, and Meagan Cross (Chair, FAST AU)

Kiwi-mums meet-up

The Hendersons, Ed Weeber and Kevin Kennedy

We were warmly welcomed and by the end of
the weekend, we felt well
connected. Indeed it became clear that we could
achieve much more by
working closer together as

an Australasian AS team.
We are so grateful to Liz
Stanley, Anne Funke and
the wonderful ASA organizing Committee for providing this wonderful networking opportunity for
our NZ families.

The global picture: where to now…?
The Angelman Network is
seeking to actively expand
on the initiatives which the
recent international conferences have generated.
We aim to:
1. Identify NZ scientists,
medical professionals and
organizations that are
interested in Angelman
Syndrome.
2. Form a NZ AS Network
via phone calls, emails

and face-to-face meetings.
3. Connect this group to
international individuals ,
orgs & institutes who
share similar goals for AS.
4. Continue strengthening
the International AS
Collective so that we can
‘build faster tracks’ (as per
FAST AU), ie. collaborate
globally, share information
and resources quicker,

fundraise harder and
initiate more research,
world wide.
5. Focus on achieving
these short term goals by
the next International
Angelman Day—Feb 15th
2014.
We invite you to follow our
progress on our website !
www.angelmannetwork.com