Battens.org.au
Contact Information
Australian Chapter of Batten Disease Support and Research
Association Inc. is located
at
9 Norton Avenue
Killarney Vale
NSW, Australia 2261
For more detailed information on the various forms of Batten's disease and for support for families of affected children, please contact:
Chapter Facilitator and Public Officer
Name: Vanessa Anderson
Email: gvjcando@ozemail.com.au
Phone: 02 43345785
Vanessa is also the Support person for newly diagnosed families, and has experienced Batten Disease with her son, Jordan
Name: Ross and Sue Warren:
Email: DRWarren@xtra.co.nz
Phone: N.Z. 6492948157
Ross and Sue are the Support Persons for New Zealand families and have experienced Batten Disease with two of
their daughters.
Secretary
Name: Amanda Blakers
Phone: 0298717547
Email: dablakers@optusnet.com.au
Memberships Officer
Name:Gina Cherry
Phone: 0262912401
Email:gina_co@bigpond.net.au
Sibling Support Program
Name: Rob and Lauren Partridge
Phone: 02 43345785
Equipment Exchange Program
Name: Leo Murnane
Phone: 02 63522798
Email: juliemurnane@dodo.com.au
Publications Librarian
Name: Sandra Bain
Phone: 0411641892
Email: sandra.bain@lccq.org.au
National Information Co-ordinator
Name: Lee-Anne Clark
Phone: 0408003256
Email: leeclark61@hotmail.com
Treasurer
Name: Ian Tweedie
Phone: 0244711725
Email: tweeds@bigpond.com
Merchandise Purchase/Sales
Name: Linda McLachlan
Phone: 0351992628
Email: linmack@wideband.net.au
Carrier Testing for families
Approaching your nearest Genetic Services is advisable and
is available in all capital cities and most regional cities. This allows the
families to discuss all of the relevant factors with respect to carrier testing and the
consequences of carrying out that testing. It may be possible that the chosen
Genetic Service does not have information on the available testing - please then contact:
Dr. Michael Fietz
Head of National Referral Laboratory,
Womens and Childrens Hospital, Adelaide
Ph: 08 81618062
Web: www.wch.sa.gov.au/nrl.html
The BDSRA in USA has established a directory of over 300
affected families, publishes a quarterly magazine called "The Illuminator"
and holds an An annual conference in
July
with parallel sessions for medical practitioners,
parents and siblings.
Further information
about the American Association may be obtained by contacting:
Lance Johnston, Director
Email; bdsra1@bdsra.org
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