DebRA (SA) was birthed on 23rd January 1996 at a meeting at the Women & Children's Hospital called by Dr Julie Wesley & Linda Turner of Victor Harbor. Linda had invited persons who live with Epidermolysis Bullosa, their families & supporters to come together to form a support group in South Australia. Eight families were represented & formally agreed to establish what is now known as DebRA (SA) Inc.

Since 1996 DebRA (SA) has been actively working towards raising community awareness about the skin condition.

DebRA (SA) Inc. is formally associated with the national body of DEBRA-Australia Inc.

Our History

May 2003: DebRA (SA) hosted the inaugural national EB conference called Gossamer - a conference to get under your skin. The conference was opened by DebRA (SA) Patron Margaret Rohan-Kelly, former Miss Australia, author & mother of eight. This was a wonderful event which set the stage for the next national conference which was held in Sydney in 2007.

March 2005: the 1st Edition of DebRA (SA) News hit the press - to view all copies of the newsletter please visit the SA News page on this site.

November 2005: DebRA (SA) celebrated the inaugural National EB Butterfly Day with an afternoon tea in the leafy suburb of Burnside. Our Patron, Margaret Rohan-Kelly was our guest speaker and some 20 guests attended the occasion.

November 2006: DebRA (SA) celebrated the 2nd National EB Butterfly Day with an afternoon tea in the exquisite ballroom of Auchendarroch House, Mt Barker. Our Patron, Margaret Rohan-Kelly was the guest speaker once more and we were excited to entertain 60 people!

November 2007: DebRA (SA) celebrated the 3rd National EB Butterfly Day at Carrick Hill, Springfield with a sumptuous morning tea and a guest speaker, Diane Watts, introduced by our Patron, Margaret Rohan-Kelly.

November 2008: DebRA (SA) celebrated the 4th National EB Butterfly Day with the Wings of Hope State Conference held in the Meeting Hall at Adelaide City Council. Keynote speakers were A/Professor Alison Cowan and Dr Lachlan Warren, Kate Turner and Paolo Lucia.

Past Committee
Inaugural President: Sherrel Boyd.
Past Presidents: Roger Trevor; Robert Puckridge; Karen Rix; Carmela Lucia
Publicity: Shirlee Lindner
Secretary - Linda Turner
Treasurer - Laraine Frost
Both Linda & Laraine have held their positions since the inaugural meeting.

2009-2010 Committee
President: Zlatko Kopecki
Vice-President: Roger Trevor
Secretary: Linda Turner
Assistant Secretary: Kim Doecke
Treasurer: Laraine Frost
Editor: Meredith Yates
Conference Publicity: Dianne Donnellan
Committee Members: Shirlee Lindner, Karen Rix, Kate Turner,

PATRON: Margaret Rohan-Kelly

Introducing the DebRA(SA) Committee

Zlatko is a PhD student at the Wound Healing Laboratory of the Women's and Children's Health Research Institute, Adelaide under the supervision of A/Prof. Allison Cowin. In collaboration with Prof. Dedee Murrell in Sydney, his project involves investigating the role of Flightless 1 protein in patients suffering from EB.

Zlatko has a stong passion for wound healing and blistering diseases and is dedicated to community work and improving the quality of life for patients suffering from EB.

Roger is an inaugural member of DebRA (SA). He is also the Public Officer for DebRA Australia and was instrumental in the formation of the National Association. Roger is a retired Local Government CEO and has worked tirelessly behind the scenes preparing CDs and DVDs to ensure the history of the organization is well documented.

Roger lives with a mild form of eb and his story appears on our special stories page. His love of yachting and travel with the love of his life, Patsy, ensures that interesting anecdotes are ready to be told and heard by those of us who know and appreciate his charm.

Margaret has been our Patron since the Gossamer Conference in 2003. Margaret is former Miss Australia, author and mother of eight. She is a syndicated columnist in various local newspapers and is a well-respected speaker, life coach and motivator.

Margaret is well-known for her love of cycling which has taken her to many parts of Australia. She has travelled extensively and is simply a delight to have on our team.

Linda is the mother and full-time carer of 21 year old Kate who lives with eb. Linda is one of the initiators of DebRA (SA) and is instrumental in organizing many fundraising events. She has travelled with Kate to Melbourne to meet Rove McMannus who subsequently commentated a DVD on eb which was produced in 2006.

Linda's love of handcrafts and quilting has offered people an opportunity to purchase her work with the proceeds going to DebRA (SA).

Laraine married into a family who had a history of a mild form of eb and has been SA Treasurer since the inception of the Association. She is a wonderful ambassador for DebRA (SA) and spearheads many fundraising and publicity events.

Her favourite pastime (alongside her deep commitment to & well-appreciated role in DebRA SA) is bushwalking and counts her proudest achievement as walking the entire Heysen Trail - a trek of 1200kms from Cape Jervis on the southern tip of SA to Parachilna in the Flinders Ranges in the northern part of the state.

Dianne was intoduced to the organisation at the 2007 Carrick Hill eb Butterfly Day celebrations when she was unexpectedly invited to staff the sales stall - she did an amazing job with great success. Not surprisingly she was invited to repeat the feat at the Wings of Hope conference in 2008 ... and did so with even more success!

Hence Dianne has been invited to serve on the committee in 2008-2009 and will play an increased role in marketing for the Working Towards Stronger Skin conference planned for November this year.

Karen lives with eb herself and has children who also have the skin condition. She has been a carer to several young people with eb and has accompanied them overseas for trips and conferences. Karen has accumulated an extensive knowledge base on the care of eb people and is widely appreciated for all that she does.

Karen has been instrumental in promoting the organisation of DebRA (SA) and although stepping down from the President's role last year, remains an active contributor to the organization.