For current Fundraising Events, please click here

Creutzfeldt-Jakob disease (CJD) is an extremely rare and fatal neurological disease that has no effective treatment. The CJDSGN is keen to promote awareness and knowledge amongst health care professionals and support the work of the research teams with continued hope for a treatment or cure in the future. Every cent counts and the CJDSGN guarantees that all donations received go directly to support this goal.

The University of Melbourne, La Trobe University, Melbourne  and the University of Sydney are very appreciative of all monies received that assist the research teams in their work on CJD and prion diseases in Australia.

Our research community is very touched by the support that CJD families and friends give towards their work by providing that extra funding that, hopefully, will make the difference.

The CJD Support Group Network will continue to provide funds to assist with the purchase of equipment that will enhance the work that researchers are doing at the forefront of research into CJD to develop diagnostic and treatment strategies for this and similar diseases. Very recently funding has been provided for equipment that will see the introduction of the RT-QuIC diagnostic test into Australia.

With the generous support of CJD families and friends the CJDSGN has also provided a number of memorial awards to assist with new projects that will bring some exciting research work to a level required to attract future NHMRC funding. In recent years our focus has been on providing memorial grants to assist maintain the level of research into prion disease in Australia as traditional scientific research grants have been reduced across all fields.

Without the amazing support of families and friends in memory of a loved one lost to CJD, prion disease research would have been greatly decreased.

Thank you so much for caring and for helping us towards our goal of finding a cure for those who will unfortunately will be affected by this devastating disease in the future.

Total funds raised towards research – $1,627,836.97

2006 – 2010, 2011, 2012, 2013, 2014, 2015, 2016, 2017, 2018, 2019, 2020, 2021

CJDSGN Memorial Grants, Awards and equipment purchases for 2021 – Total $213,559.73

Memorial Grants and Awards for 2021

CJDSGN Memorial Award 2021 in memory of Michael Luscombe
$25,000 awarded to Dr Dhamidhu Eratne – Melbourne Health. Project title – ‘Moving to clinical translation: understanding the range and relationship between age and biomarkers in Creutzfeldt-Jakob disease, and developing age-specific reference ranges’.

CJDSGN Memorial Award 2021 in memory of Michael Luscombe
$25,000 awarded to Lawson Research Laboratory, University of Melbourne. Project Title: ‘Should we worry about prion associated heart disease?’

CJDSGN Memorial Award 2021 in memory of Stephen (Jake) O’Hara
$20,000 awarded to Dr. Eduard Willms – Hill Lab, La Trobe Institute for Molecular Sciences. Project title – ‘Novel inhibitors of extracellular vesicle formation: providing new insights into the spread and treatment of prion diseases’.

CJDSGN Memorial Grant 2021 in memory Andrew Fisher, Frank Burton and Patricia Kershaw
$50,000 awarded to Laura Ellett – Lawson Research Laboratory, University of Melbourne.

CJDSGN Memorial Award 2021 in memory of Eva Wright, Anne Friswell, Sarah Woolley, Mark Pritchard and Primo Monaci
$18,600 awarded to awarded to Lawson Research Lab, University of Melbourne. Project title – ‘The role of co-pathologies in the clinical presentation of prion disease. Year 2’.

CJDSGN Memorial Award 2021 in memory of Jenny Duckworth, Warren George, Francesca Indelicato and Theo Souris
$20,000 awarded to Lawson Research Laboratory, University of Melbourne. Project Title: ‘The role of co-pathologies in the clinical presentation of prion disease. Year 3’

CJDSGN Memorial Award 2021 in memory of Catherine & Michael Heagerty, Peter Cochrane and Merianne Brown
$35,600 awarded to the ANCJDR for the purchase of an additional FLUOstar Omega for RT-QuIC diagnostic testing.

CJDSGN Equipment Donations 2021

CJDSGN Memorial donation in memory of Mario Papalia
$12,411.68 awarded to ANCJDR for the purchase of Cytiva equipment.

CJDSGN Memorial donation in memory of Shirley Riggall
$1,948.05 awarded to ANCJDR for the purchase of a HP Probook 650.

2021 PhD Scholarship

CJDSGN PhD Scholarship in memory of Geoff Byford
$5,000 awarded to Laura Ellett, Lawson Research Laboratory, University of Melbourne.

CJDSGN Memorial Grants, Awards and equipment purchases for 2020 – Total $93,693.14

Memorial Grants and Awards for 2020

CJDSGN Memorial Award 2020 – CJD Fun Run 2019 in memory of Sandra Kernahan, Stephen (Jake) O’Hara, Lynne Norman and Norelle Edwards – and in memory of Anne O’Shea and others.
$50,000 awarded to Dr Christiane Stehmann, ANCJDR, Melbourne. Project Title: ‘A pilot study to advance brain structural magnetic resonance imaging (MRI) to improve the accuracy of early prion disease diagnosis’.

CJDSGN Memorial Award 2020 in memory of Michael Luscombe
$25,000 awarded to Dr Dhamidhu Eratne – Melbourne Health. Project Title: ‘Biomarker discovery in blood and cerebrospinal fluid in Creutzfeldt-Jakob disease’.

CJDSGN equipment donations 2020

CJDSGN Memorial donation in memory of Frank Burton
$12,990 to the Australian National CJD Registry (ANCJDR) for the purchase of a replacement freezer. (Freezer plaque)

CJDSGN Memorial donation in memory of Robert (Mick) Grey
$1,467.14 to the Australian National CJD Registry (ANCJDR) for the purchase of an HP laptop for RT-QuIC diagnostic tool.

2020 ‘Top up’ Scholarship Awards

Carol Willesee Ph.D. Top-Up Scholarship
$4,236 awarded to Laura Ellett, Lawson Research Laboratory, University of Melbourne.

CJDSGN Memorial Grants, Awards and equipment purchases for 2019- Total $266,677.00

Memorial Grants and Awards for 2019

CJDSGN 2019/2020 Memorial Grant in memory of Frank Burton
$55,000 awarded to Dr Victoria Lewis, Collins Laboratory, University of Melbourne. (Interim report)

CJDSGN Memorial Award in memory of Fiona Radojev
$12,560 awarded to Dr Cathryn Ugalde, La Trobe University, Melbourne. Project: ‘Assessing the sensitivity of prion disease-associated exosomal miRNA profiles to therapeutic intervention in organotypic brain slices’.

CJDSGN 2019/2020 Memorial Award in memory of Catherine and Michael Heagerty
$19,460 awarded to Dr Cathryn Ugalde, La Trobe University, Melbourne. Project: ‘Elucidating the role of non-neuronal brain cells in the pathogenesis of prion disease during’.

CJDSGN Memorial Award in memory of Adrian Chesterton, Norma Crawley and Danilo Banzon Cruz
$12,000 awarded to Dr Lesley Cheng, La Trobe University, Melbourne. (Report by Professor Andrew Hill) Project: ‘Profiling serum derived exosome-associated miRNA as a diagnostic tool for prion disease’.

CJDSGN Memorial Award in memory of Jennifer Duckworth
$25,000 awarded to Associate Professor Victoria Lawson, University of Melbourne. Project: ‘Treatment of medically relevant prion disease’.

CJDSGN Memorial Award in memory of Michael John Dempsey (MJD for CJD Golf Day and Dinner)
$25,600 awarded to Associate Professor Victoria Lawson, University of Melbourne. Project: ‘The role of co-pathologies in the clinical presentation of prion disease’.

CJDSGN Memorial Award in memory of Anne Friswell, Peter Delchau and Pamela Stead
$10,000 awarded to Associate Professor Victoria Lawson, University of Melbourne. Project: ‘The effect of human strain variation on prevention of prion disease transmission’.

CJDSGN Memorial Award in memory of Michael Luscombe
$51,600 awarded to Dr Dhamidhu Eratne, Melbourne Health. Project: ‘Utility of blood fluid neurofilament light chain in Creutzfeldt-Jakob disease’.

CJDSGN equipment donations 2019

CJDSGN Memorial donation in memory of Mario Papalia
$35,000 to Australian National CJD registry (ANCJDR) for the purchase of an additional FLUOstar Omega for RT-QuIC .

2019 Travel Awards to assist students and young researchers to participate in overseas prion conferences

CJDSGN Travel Award No 10 in memory of Silva Coelho
$1,000 awarded to Wenting Zhao- La Trobe University, Melbourne- to attend Prion 2019 in Edmonton, Canada.

CJDSGN Travel Award No 11 in memory of Silva Coelho
$1,000 awarded to Laura Ellett- Lawson Research Laboratory, Melbourne- to attend the 2019 Asian Pacific Prion Symposium in Tokyo, Japan.

CJDSGN 2019 Special Research and Education Travel Award in memory of Robert Sisson, Chris Hausler, Pamela List, Audrey Marshall and other loved ones lost to CJD.
$9,057 awarded to Dr Christiane Stehmann- Australian National CJD Registry (ANCJDR).

2019 ‘Top up’ Scholarship Awards

Carol Willesee Ph.D. Top-Up Scholarship
$9,400 awarded to Laura Ellett, Lawson Research Laboratory, University of Melbourne.

CJDSGN Memorial Grants, Awards and equipment purchases for 2018- Total $304,868.49

Memorial Grants and Awards for 2018

CJDSGN Memorial Grant- City2Sea 2018 in memory of Stephen (Jake) O’Hara (Team Jake), Jennifer Duckworth (Team Jenny) and others lost to CJD (Funding was provided from the 2016 and 2017 City2Sea Fundraising event)
$50,000 awarded to Dr Victoria Lewis, Collins Laboratory, University of Melbourne.

CJDSGN Memorial Award in memory of Michael Luscombe
$45,000 awarded to Dr Victoria Lewis, Collins Laboratory, University of Melbourne. Project:’Matrix metalloprotease mediated prion protein proteolysis: Investigating normal processing and links to prion disease’. (Interim report)

CJDSGN Memorial Grant in memory of Frank Burton, Bassil Gianniodis, Primo Monaco, Rhonda Sanders, Cesarina Still and Ross Glasscock and others lost to CJD 
$50,000 awarded to Dr Simon Drew, Department of Medicine, Royal Melbourne Hospital.

CJDSGN Memorial Award in memory of Dominic Battista
$50,000 awarded to Simote Totauhelotu Foliaki, Collins Laboratory, University of Melbourne.

CJDSGN Memorial Award in memory of Catherine Heagerty
$15,000 awarded to Associate Professor Victoria Lawson, Research Group, University of Melbourne for consumables for the project ‘Mouse model of sporadic CJD’.

CJDSGN Memorial Award in memory of Michael Luscombe
$57,420 awarded to Dr Dhamidhu Eratne– Neuropsychiatrist, Neuropsychiatry Unit, Royal Melbourne Hospital. Project: ‘Utility of cerebrospinal fluid neurofilament light chain in Creutzfeldt-Jakob disease’.

CJDSGN equipment donations 2018

CJDSGN Memorial donation in memory of Judith Liauw, Douglas Brown, Catherine Heagerty and Shirley Joiner
$12,490 to ANCJDR for the purchase of an additional freezer –  Forma™ 8900 Series Upright (freezer plaque)

CJDSGN Memorial Award in memory of Catherine Heagerty
$8,086.49 for the purchase of equipment for the project ‘Mouse model of sporadic CJD’ (equipment 2)

2018 Travel Awards to assist students and young researchers to participate in overseas prion conferences

CJDSGN Travel Award in memory of Silva Coelho
1 x $1,000 awarded to Abu Mohammed Taufiqual Islam

CJDSGN Travel Award in memory of Silva Coelho
2 x $1,000 awarded to Dr Matteo Senesi

2018 ‘Top up’ Scholarship Awards

Carol Willesee Ph.D. Top-Up Scholarship
$5,000 awarded to Abu Mohammed Taufiqual Islam.

CJDSGN Top-Up Scholarship in memory of Primo Monaci
$5,000 awarded to Ms Laura Ellett, Lawson Research Group, University of Melbourne

CJDSGN Memorial Grants, Awards and equipment purchases for 2017- Total $134,014.70

Memorial Grants and Awards for 2017

CJDSGN Memorial Award in memory of Frank Burton
Grant No 4 2017- $40,000 Awarded to the Lawson Laboratory, University of Melbourne. Report

CJDSGN Memorial Award in memory of Lorraine Seabrook
Grant No 5  2017- $51,750.00 Awarded to Dr Lesley Cheng and Professor Andrew Hill, La Trobe University, Melbourne. 2019 Conference report

CJDSGN Memorial Grant in memory of Frank Burton
Grant No 6 2017-$19,803.80 Awarded to Cathryn Ugalde, Hill Laboratory, La Trobe.
Ph.D. scholarship $14,803.80 plus $5,000 consumables.

CJDSGN equipment donations 2017

CJDSGN donation in memory of Norma Crawley
Cell Counter – $4,210.90 – Professor Andrew Hill, La Trobe University, Melbourne.

2017 ‘Top up’ Scholarship Awards

Carol Willesee Ph.D. Scholarship
$5,000 Awarded to Taufiqual Islam, Collins Laboratory, University of Melbourne.

CJDSGN Memorial Ph.D. Scholarship in memory of Marek Gorcynski
$5,000 Awarded to Simote Foliaki, Collins Laboratory, University of Melbourne.

CJDSGN Memorial Ph.D. Scholarship in memory of Frank Burton
$5,000 Awarded to Laura Ellett, Lawson Laboratory, University of Melbourne.

CJDSGN Memorial Ph.D. Scholarship in memory of David Matthews
$3,250 Awarded to Cathryn Ugalde, Hill Laboratory, La Trobe, Melbourne.

CJDSGN Memorial Grants, Awards and equipment purchases for 2016 – Total $181,306.00

Memorial Grants and Awards for 2016

CJDSGN Memorial Grant in memory of Sandra Kernahan, Stephen (Jake) O’Hara, Catherine Heagerty, Grasso family, Victoria Larielle, Barbara Childerhouse, Marilyn Hart and Pamela Thomas (City2Sea 2015)
Grant No 1 2016 – $25,000 Awarded to Dr Victoria Lewis. (Report)

CJDSGN Memorial Grant in memory of Rhonda McCoy and the many people affected by prion disease in Australia
Grant No 2 2016 –  $25,000 Awarded to Dr Cathryn Haigh.

CJDSGN Memorial Grant in memory of Susan Maclean, Carmel Petersen, Anne O’Shea, Leslie Cleary, Beryl Hogg, Peter Smith, Sophie Desteno, Pamela Conoulty and Richard Ratliff
Grant No 3 2016 –  $25,000 Awarded to Laura Ellett.

CJDSGN Memorial award in memory of Silva Coelho, Year 2 funding
$31,200 Awarded to Professors Simon Hawke and Georges Grau, University of Sydney.

CJDSGN equipment donations and funding to the Australian National CJD Registry 2016 – $57,106

CJDSGN donation in memory of Douglas Brown
Forma™ 900 Series -86°C Upright Ultra-Low Temperature Freezer – $12,990

CJDSGN donation in memory of Mario Papalia
FLUOstar Omega – Plate Reader – $31,700

CJDSGN Special Travel Award in memory of Sandra Kernahan
Awarded to Shannon Sarros –2 week training visit to Edinburgh UK for RT-QuIC training – $7,033

CJDSGN Special Travel Award in memory of Frank Burton
Awarded to Dr Christiane Stehmann – visit to the CJD Foundation conference, Washington DC, National Prion Disease Pathology Surveillance Unit (NPDPSC) Cleveland USA and the CJD Program, University of California, San Francisco –   USA  $5,383.

2016 Travel Awards to assist students and young researchers to participate in overseas prion conferences

CJDSGN Travel Award in memory of Silva Coelho
$1,000 Awarded to Cathryn Ugalde.

CJDSGN Travel Award in memory of Silva Coelho
$1,000 Awarded to Simote Foliaki.

2016 ‘Top up’ Scholarship Awards

Carol Willesee Ph.D. Scholarship
$8,000 Awarded to Cathryn Ugalde, Hill Laboratory. News on the Award

CJDSGN Memorial Ph.D. Scholarship in memory of Sandra Kernahan
$8,000 Awarded to Taufiqual Islam, Collins Laboratory.

CJDSGN Memorial Grants, Awards and equipment purchases for 2015 – Total $149,492.75

Memorial Grants and Awards for 2015

Special Stem Cell Project in memory of Silva Coehlo
$9,819 Awarded to Dr Cathryn Haigh – Collins Laboratory, University of Melbourne.

CJDSGN Memorial Grant 2015 in memory of Silva Coehlo
$10,000 Awarded to Professors Simon Hawke and Georges Grau – University of Sydney.

$10,000 Awarded to Lawson Research Laboratory, University of Melbourne. Donated by SRACA, SA

CJDSGN Memorial Award No. 1 2015 in memory of  Judith Anne Liauw
$20,000 Awarded to Professors Simon Hawke and Georges Grau, University of Sydney. Project title: ‘Fingolimod as a potential inhibitor of prion replication’.

CJDSGN Memorial Award No 2 2015 in memory of Ross Glasscock, Robert Craig, Carmelo Tripoli, Arthur Schinck and Arlene Hamilton 
$20,000 Awarded to Dr Victoria Lewis – Collins Laboratory, University of Melbourne. Project title: ‘Elucidating the role of matrix metalloproteases in prion protein proteolysis and prion diseases’.

CJDSGN Memorial Award No 3 2015 in memory of Silva Coehlo
$20,000 Awarded to Dr Simon Drew – Drew Laboratory, University of Melbourne. Project title: ‘What can we learn from making synthetic prions in a test tube and can we use this knowledge to identify triggers for human prion disease?’

CJDSGN equipment donations and funding 2015

Fear avoidance equipment in memory of  Stephen (Jake) O’Hara, City To Sea 2014 – in memory of Catherine Heagerty, Sandra Kernahan, Ross Glasscock, Kenneth Renkin and Pamela Thomas. Blackmore Fun Run, Sydney in memory of Graham Brown. Danielle runs 10 kms, SA in memory of Sophie Destino
$30,000 Awarded to Matteo Senesi – Collins Laboratory, University of Melbourne

Cell Counter in memory of CJD Ride Free – in memory of Margie Coxhead and in memory of Robert Craig, Caroline Kirby and Allan Smith
$15,987.18 Awarded to Cathryn Haigh – Collins Laboratory, University of Melbourne

Cell Counter in memory of Primo Monaci
Western Blot System in memory of Primo Monaci
pH Meter in memory of Primo Monaci
$10,686.57 Awarded to Professors Simon Hawke and Georges Grau – University of Sydney

2015 Travel Awards to assist students and young researchers to participate in overseas prion conferences

Prion 2015 in memory of Silva Coelho
$1,000 Awarded to Dr Victoria Lewis – University of Melbourne

8th Annual World Protein and Peptide Conference 2015, China in memory of Carol Bartley
$1,000 Awarded to Dr Cathryn Haigh – University of Melbourne

World Congress of Molecular and Cellular Biology 2015, China in memory of Silva Coehlo
$1,000 Awarded to Dr Cathryn Haigh – University of Melbourne

CJDSGN Memorial Grants, Awards and equipment purchases for 2014 – Total $6,270.00

CJDSGN equipment donations and funding 2014

Centrifuge in memory of Silva Coehlo
$5,270 Awarded to Lawson Research Laboratory, University of Melbourne

2014 Travel Award to assist students and young researchers to participate in overseas prion conferences

Travel Award in memory of Silva Coelho
$1,000 Awarded to Matteo Senesi. Poster

CJDSGN Memorial Grants, Awards and equipment purchases for 2013 – Total $58,005.00

Memorial Grants and Awards for 2013

CJDSGN 2013 Memorial Scholarship – Victorian Gala dinner, TRS Cycle Centre and in memory of Noel O’Connor and others.
$15,000 PhD Scholarship Awarded to Layla Sinclair – Collins Laboratory, University of Melbourne.

CJDSGN 2013 Memorial Grant  – WA fundraising dinner, Mt Kilimanjaro climb in memory of Robert Craig and in memory of Margaret Scott, Keith Griffin, Grasso Family and Gwen Ward.
$30,500 Awarded to Victoria Lewis – Collins Laboratory, University of Melbourne.

CJDSGN PhD Student Fund in memory of Silva Coehlo
$6,000 Awarded to Professor Simon Hawke, University of Sydney.

CJDSGN equipment donations and funding 2013

Homogeniser in memory of Silva Coehlo
$6,505 Awarded to Hill Laboratory, Melbourne

CJDSGN Memorial Grants, Awards and equipment purchases for 2012 – Total $23,939.81

Memorial Grants and Awards for 2012

CJDSGN PhD Student Fund – Victorian Gala dinner and in memory of Silva Coehlo, Shannon Eley, Bill Topolitsis, Hermet Watsa and others. 
$16,341.81 Awarded to Professor Simon Hawke, University of Sydney.

CJDSGN equipment donations and funding 2012

Cell counter in memory of Silva Coehlo
$7,598 Awarded to Hill Laboratory, Melbourne

CJDSGN Memorial Grants, Awards and equipment purchases for 2011 – Total $32,000.00

CJDSGN equipment donations and funding 2011

Electroporator & Accessories in memory of Primo Monaci
$17,000 Awarded to Collins Laboratory, University of Melbourne.

Sterotaxic Injection Apparatus in memory of Judith Liauw
$15,000 Awarded to Collins Laboratory, University of Melbourne.

CJDSGN Memorial Grants, Awards and equipment purchases for 2006 – 2010 – Total $164,010.65

Memorial Grants,  Awards and Equipment Donations for 2006 – 2010

Donation for prion disease research – Riding for Dad in memory of Ronald Donnellan, Hell’s Angels in memory of Helen Ferry and in memory of Phillip Hutchins, Robyn Kerfoot, Ross Glasscock and others. 
$62,910.84 Awarded to Collins Laboratory , University of Melbourne.

Willesee Trust Fund in memory of Carol Willesee to support ongoing top-up scholarships for PhD students working in the field of prion disease research.
$101,099.51 Awarded to University of Melbourne.

Equipment purchased from donations to Collins Laboratory, University of Melbourne.

Thanks again to our sponsor Australian Animal Care Systems Pty Ltd for continued and ongoing support of research in Australia in memory of Silva Coelho.

Thank you to Simone who since 2009 –  after reading the story written by Amy Willesee about her mother Carol Willesee’s illness with CJD – has made an annual donation to research in Australia now totalling $8,800.00.

We would also like to acknowledge donations made in memory of so many lost to CJD – every cent helps towards an answer and hope.