by Vanessa Anderson OAM, Public Officer BDSRA Australia
Dr Michael Fietz has been a familiar face around BDSRA Australia for many years and has most recently served as the Boards Vice President for over 7 years from 2016 to March 2024. He is a Fellow of the Faculty of Science of the Royal College of Pathologists of Australasia and holds a PhD and Bachelor of Science from the University of Adelaide. Michael managed the Australia National Referral Laboratory for Batten disease for almost 15 years and has been associated with BDSRA Australia for over 20 years. Presently, Michael works in the field of next generation DNA sequencing in WA.
I first became acquainted with Michael when I was the BDSRA Manager in 2000 and Michael was the Head of the National Referral Laboratory in Adelaide at the Women’s & Children’s Hospital.
Michael attended the very first Australian Chapter for Batten Disease Conference in 2001 where he shared diagnostic information and made associations with each worldwide Battens related scientist in attendance. Michael’s first conference presentation was titled ‘Testing for Batten Disease: what we are able to do” and covered the developments at the time in testing for the 3 most common forms of Batten Disease.
Michael attended all our Family conferences in the years to come, each time as a speaker, to support the Batten Community, but also to spend time with the families who he became so close to.
Not only would Michael provide families with diagnostic information for all these years, but he shared his knowledge in an ‘easy to understand’ way and quickly became a part of our Batten family.
I personally found comfort from the insightful facts and reassurance he gave me around PGT testing for my own pregnancy as he would consistently update us on testing parameters/changes.
Michael with Vanessa’s daughter in 2003 at the Family Conference
In 2015 Michael supported a BDSRA initiative to have an Australian Scholarship program where he willingly became one of the panel members for the Battens Research Committee.
Michael then moved to WA where he settled into a new role as Scientist in Charge, Sequencing PathWest Laboratory Medicine WA.
True to his unwavering commitment to Batten Disease he travelled back to NSW to be a part of special occasions such as Family Conferences, the BDSRA Australia twenty year milestone event and AGMs where Michael was once again warmly welcomed by our families.
Michael expressed he wanted to somehow continue to support BDSRA Australia with his scientific knowledge and with encouragement and support from myself and Alicia Brown (SA), he accepted the Vice President position at the AGM on 20th November 2016.
During his term on the BDSRA Australia board Michael has professionally and compassionately continued to provide a presence at our family conferences and attended our regular monthly BDSRA meetings.
AGM November 2016 with new and outgoing board and committee members (from left) Hamish Murchison, Nicole Onrust, Jane Seychell, Harry Partridge, Laura Smith, Vanessa Anderson, Ian Tweedie and Michael Fietz.
With such an impressive and dedicated in-depth knowledge in the diagnostic process and DNA science of Batten disease it's no wonder Michael has become such a respected and compassionate friend to so many of our Batten families.
Michael quoted:
More recently at the 2022 Family Retreat in NSW: Vanessa and Alicia with Michael
Liz Sanson (Family Support Coordinator) and Michael talking after 'Inspiring Supporters' dinner at the Family Retreat in 2022
Dr Michael Fietz has been a familiar face around BDSRA Australia for many years and has most recently served as the Boards Vice President for over 7 years from 2016 to March 2024. He is a Fellow of the Faculty of Science of the Royal College of Pathologists of Australasia and holds a PhD and Bachelor of Science from the University of Adelaide. Michael managed the Australia National Referral Laboratory for Batten disease for almost 15 years and has been associated with BDSRA Australia for over 20 years. Presently, Michael works in the field of next generation DNA sequencing in WA.
I first became acquainted with Michael when I was the BDSRA Manager in 2000 and Michael was the Head of the National Referral Laboratory in Adelaide at the Women’s & Children’s Hospital.
Michael attended the very first Australian Chapter for Batten Disease Conference in 2001 where he shared diagnostic information and made associations with each worldwide Battens related scientist in attendance. Michael’s first conference presentation was titled ‘Testing for Batten Disease: what we are able to do” and covered the developments at the time in testing for the 3 most common forms of Batten Disease.
Michael attended all our Family conferences in the years to come, each time as a speaker, to support the Batten Community, but also to spend time with the families who he became so close to.
Not only would Michael provide families with diagnostic information for all these years, but he shared his knowledge in an ‘easy to understand’ way and quickly became a part of our Batten family.
I personally found comfort from the insightful facts and reassurance he gave me around PGT testing for my own pregnancy as he would consistently update us on testing parameters/changes.
Michael with Vanessa’s daughter in 2003 at the Family Conference
In 2015 Michael supported a BDSRA initiative to have an Australian Scholarship program where he willingly became one of the panel members for the Battens Research Committee.
Michael then moved to WA where he settled into a new role as Scientist in Charge, Sequencing PathWest Laboratory Medicine WA.
True to his unwavering commitment to Batten Disease he travelled back to NSW to be a part of special occasions such as Family Conferences, the BDSRA Australia twenty year milestone event and AGMs where Michael was once again warmly welcomed by our families.
Michael expressed he wanted to somehow continue to support BDSRA Australia with his scientific knowledge and with encouragement and support from myself and Alicia Brown (SA), he accepted the Vice President position at the AGM on 20th November 2016.
During his term on the BDSRA Australia board Michael has professionally and compassionately continued to provide a presence at our family conferences and attended our regular monthly BDSRA meetings.
AGM November 2016 with new and outgoing board and committee members (from left) Hamish Murchison, Nicole Onrust, Jane Seychell, Harry Partridge, Laura Smith, Vanessa Anderson, Ian Tweedie and Michael Fietz.
With such an impressive and dedicated in-depth knowledge in the diagnostic process and DNA science of Batten disease it's no wonder Michael has become such a respected and compassionate friend to so many of our Batten families.
Michael quoted:
“There are so many memories of my time with BDSRA. There are highlights from all of the family conferences that I attended. Many involved late nights and alcohol, with the conversations that flowed, those with invited overseas guests discussing the hope for cures for Batten disease, with parents wanting to understand more about what goes wrong in Batten disease and why it progresses differently in different affected children, and talking with the silent dads, who opened up after a few beers to ask those questions that had been going through their minds for quite some time. I remember being totally moved by parents opening up at breakout sessions, telling of their joy and anguish of their lives with Batten disease, and of seeing the joy and excitement on the kids’ faces at San Remo with the animal farm, the helicopter and the bike rides. On thinking about it, the two things that have touched me most are the commemorative services at each of the conferences (they always have tears streaming down my face), and the witnessing of new life, made possible through the work that my lab carried out, particularly holding one of those beautiful babies at a Sea World meeting. It was a very precious moment.”
I truly believe that Michael has been inducted into a lifelong BDSRA Australia membership and he will always be welcomed to continue his participation with the association in any manner his is willing. He is an all-round amazing person!!!
More recently at the 2022 Family Retreat in NSW: Vanessa and Alicia with Michael
Other Acknowledgments:
From Harry Partridge, BDSRA Australia President 1996 -2016
I first met Michael almost 30 years ago when he was working as Chief Medical Scientist at SA Pathology, Adelaide. I recall he helped in the clinical diagnoses of our CLN2-affected son, David, and subsequently in the testing of David’s two siblings. Subsequently he became part of the Battens Community and presented one of his many lectures on the medical science of Battens at our first Battens Family Conference in 2001. He has continued his support of the Battens community ever since; he has been steadfast in his willingness to deeply engage with affected families and children and to provide rational, scientific information in a human and caring way. He has been ‘one of us’ over the years, a strong and calming presence on the committee and at the bi-annual conferences with his ready source of practical, logical information and clinical testing help. A familiar and friendly face, kind and engaging, with a deep understanding of the science underpinning the various DNA mutations that cause Battens and a deep and knowing care for affected families. I do wish him well.From Brett Archer, father of Katie CLN2
We first met Michael when Katie was diagnosed, a moment that changed our lives. It was Michael who provided us with contact details for the BDRSA and other people who could help us navigate this new reality. From that very first interaction, it was clear that Michael was not just a professional doing his job; he was a compassionate and dedicated individual who genuinely cared about our family and our journey. At our first meeting, Michael already knew the names and ages of all our children. This attention to detail and his personal interest in our family provided a glimmer of hope and comfort during an incredibly challenging time. His support was unwavering, and he shared with us a wealth of information about Batten Disease and its likely progression. While hearing the prognosis was undoubtedly difficult, Michael’s approach was both honest and consoling, helping us prepare for the journey ahead. Over the years, Michael has remained a constant source of support and knowledge. His engagement with our community has been extraordinary, always available to provide insights, answer questions, and offer a listening ear. His dedication has not only informed us but also empowered us to face each challenge with a bit more strength and understanding. Michael's commitment extends far beyond his professional duties. He has become a cornerstone of our support system, someone we could rely on through the highs and lows. His compassionate nature and wealth of information have been invaluable, providing us with both the facts we needed and the emotional support we craved. In honoring Michael, we acknowledge a man who has profoundly impacted our lives. His empathy, dedication, and knowledge have made a difference not just for our family but for the entire community. Michael, you are a true hero in our eyes, and we are deeply grateful for everything you have done. Thank you for being a beacon of light in our journey.From Ineka Whiteman, Head of Research and Medical Affairs
When I first became involved with Batten disease and BDSRA Australia in 2019, Michael's reputation preceded him. He was well-published in the field of Batten disease diagnostics, had been Head of the National Referral Laboratory in Adelaide and was well-known and regarded on the international Batten research scene. Michael has since been a wonderful and reassuring sounding board for me across numerous BDSRA projects and initiatives. I am so grateful to have had his bank of knowledge and clever brain to pick over the past 5 years. But perhaps the thing I have come to appreciate and admire most about Michael, is his compassionate heart and deep connection he has formed with the Batten families and children. It's clear his involvement with the BDSRA Australia has been a labour of love for him over all these years. Thank you for everything you have brought to our organisation, Michael. You will be missed!"From Alicia Brown, mother of Kiaana CLN3
Michael spent time with Kiaana and myself and another parent explaining the gene process, drawing pictures and answering Kiaanas questions. He gave us lots of time and focus. He showed us He was much more than a scientist. He genuinely cares about the members of the Batten family. And he is also lots of fun on the dance floor!
Liz Sanson (Family Support Coordinator) and Michael talking after 'Inspiring Supporters' dinner at the Family Retreat in 2022