The Australian Chapter of Batten Disease Support and Research Association - BDSRA

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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:

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Chapter Facilitator and Public Officer
Name: Vanessa Anderson
Email: gvjcando@ozemail.com.au
Phone: 02 43345785

Vanessa is the Support person for newly diagnosed

Equipment Exchange Program
Name: Leo Murnane
Email: 02 63522798
Phone: juliemurnane@dodo.com.au

Memberships Officer
Name: Nicole Barnes
Email: nicole.barnes@gmail.com
Phone: 0407692366

Merchandise Purchase/Sales
Name: Linda McLachlan
Email: linmack@wideband.net.au
Phone: 0351992628

National Information Co-ordinator
Name: Lee-Anne Clark
Email: 0408003256
Phone: leeclark61@hotmail.com

Publications Librarian
Name: Linda McLachlan
Email: linmack@wideband.net.au
Phone: 0351992628

Secretary
Name: Amanda Blakers
Email: dablakers@optusnet.com.au
Phone: 0298717547

Treasurer
Name: Ian Tweedie
Email: tweeds@bigpond.com
Phone: 0244711725

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

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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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