Speak to a Support Coordinator

We currently have two support coordinators, in Sydney and Melbourne, with backgrounds in nursing and genetic counselling. They are here to provide emotional support, information and resources to parents, families, individuals and other members of the community affected by NF.

In more detail, the role of our support coordinators involve:

  • Being available to talk about neurofibromatosis
  • Supporting families with a new diagnosis of neurofibromatosis
  • Ongoing contact with families as needed
  • Provision of up-to-date information about NF
  • Provision of information about other organisations that may be able to provide additional support/resources
  • Organising events for the community to provide information or a space for social networking
  • Assistance in connecting members of the NF community and promoting local activities
  • Attending clinic appointments to provide support and a friendly face as a continuing contact
  • Available to be contacted by health professionals, educators and social service providers for information, awareness and advocacy for their clients with NF
  • Supporting peer support groups and their contact person through provision of appropriate training, support at local events, and as a contact for additional support
  • Advocating for the community through participation in

Our support coordinators are:

Mona Saleh

Support Services Manager
The Children's Tumour Foundation
Suite 2, 451 Lyons Road West
Five Dock NSW 2046
Phone: (02) 9713 6111
Email: mona.saleh@ctf.org.au

Natalie McLean

VIC/TAS Support Coordinator
MCRI, The Royal Children’s Hospital
50 Flemington Road
Parkville VIC 3052
Phone: (03) 9936 6268
Email: natalie.mclean@ctf.org.au

CTF Support Group Contacts

ACT - Canberra

Carey Russell
Phone: 0414 679 207
Email: holdenvx@iinet.net.au

NSW - Albury Wodonga

Lana Hansens
Phone: 0408 166 822
Email: lana.hanssens@gmail.com

NSW - Mid-North Coast

Cheryl Maurer
Phone: 0437 858 232
Email: maurercheryl@gmail.com

NSW - Newcastle

Kelly Jones
Phone: 0422 029 308
Email: misskljones@hotmail.com

NSW - Northern

Gwen Butler
Phone: (02) 6653 2403 or 0428 521 862
Email: butlersg@bigpond.com

NSW - South Coast/ Illawarra

Julia Szulerowski
Phone: (02) 4233 2449 or 0401 860 484
Email: joolsruns@gmail.com

QLD - Brisbane/ Gold Coast

Andrew Maunders
Closed Facebook - NF Brisbane/ Gold Coast Support Group

QLD - Rockhampton and Central Queensland

Katrina Sinclair
Email: gpontour@internode.on.net

QLD - Townsville

Christine James
Phone: 0408 070 834
Email: christinewhelan30@yahoo.com.au
Facebook Neurofibromatosis NF Townsville QLD

VIC - Geelong

Karla Williams
Phone: 0478 198 042
Email: karlajade8311@gmail.com

VIC - Melbourne

Leanne Forbes
Phone: 0412 209 628
Email: dandlforbesfamily@bigpond.com

TAS - Hobart

Kylie Flanagan
Phone: 0439 657 577
Email: kylie.flanagan@hotmail.com

TAS - Launceston/ Northern Tasmania

Louise Milligan
Email: loujane83@gmail.com

Additional Groups

VIC - Gippsland

Eddie Beulke
Phone: (03) 5134 1070
Email: eddiebeulke@hotmail.com

WA - Perth

David Freedman
Phone: (08) 6457 7488
Email: nfawa@iinet.net.au

QLD - Sunshine Coast

Tracey Darragh
Phone: 0428 623 637
Email: traceyd@nfsunshinecoast.com.au

New Zealand - Ladybug

Ladybug Foundation (Neurofibromatosis NZ)
Website: http://www.ladybugfoundation.co.nz