Dyskeratosis Congenita Outreach Pacific Inc (DCOP) is an incorporated association (Registration No. A0092847W) formed in 2015 by patients and families in Australia and New Zealand affected by a rare genetic disease called Dyskeratosis Congenita.

Dyskeratosis Congenita Outreach Pacific is a small group of dedicated people committed to supporting families, raising awareness and increasing clinical understanding of this rare short telomere syndrome in Australia and New Zealand.

While we are a new organisation, our sister group in the USA, Dyskeratosis Congenita Outreach, has been established since 2008, and offers us support as we embark on our mission in Australia and New Zealand.

Our vision

Through support, research and fundraising, we aim to ensure that people affected by Dyskeratosis Congenita feel supported, receive the best possible treatment and that as knowledge and understanding of this disease grows, a cure can be found.

Our objectives

  • Raise awareness of Dyskeratosis Congenita in the community to help support families affected by this rare disease.
  • Increase clinical understanding and awareness of short telomere syndromes like Dyskeratosis Congenita to improve diagnosis and treatment.
  • Advocate for and support research into Dyskeratosis Congenita and short telomere syndromes to improve treatment options and find a cure.
  • Provide outreach services to support individuals and families affected by Dyskeratosis Congenita, including providing opportunities to connect with specialists and other families.
  • Ensure people affected by Dyskeratosis Congenita have access to the latest information and developments as they become available.

Dyskeratosis Congenita Outreach Pacific Committee

DCOP is run by a committee of volunteers. Our inaugural Annual General Meeting was held on 17 November 2015 and the following people formed the committee to work towards achieving our vision and objectives.

Pam Bayard

Pam Bayard

President

Pam Bayard is from Nelson, New Zealand, and is the mother of two sons, both with Dyskeratosis Congenita and another unrelated medical condition called Kartageners Syndrome. Tragically, Pam’s son Aaron died in February 2011, aged 18. Pam’s other son, Tony, is also a Board Member. Being such a rare disease with little information available in NZ, Pam reached out for support from the Dyskeratosis Congenita Outreach (DCO) group in the USA, and travelled to their camp with her husband and Tony in 2012 and 2014. This lead to the opportunity to be on the Board of DCO, where she has held a position since 2012. After attending the Dyskeratosis Congenita conference in Sydney in 2014, Pam decided to help establish an outreach group in Australia and NZ, to reach more families and provide them with the support and connection she had received from DCO. Pam has a long history of involvement with voluntary groups and brings a wealth of experience to her role as President of Dyskeratosis Congenita Outreach Pacific. Contact Pam at pam@dcopacific.org or pambayard@dcoutreach.org.

Photo of Alison Boston

Alison Boston

 Vice president

Alison Boston lives in Sydney, Australia, and is a strategic communications professional who will be working to ensure that information and news about Dyskeratosis Congenita reaches a wide audience to raise awareness and help support affected families. Through strong partnerships with other not for profit groups and fundraising, Alison hopes to develop DCOP into a valuable resource for DC patients and the medical community. You can reach Alison at alboston@y7mail.com

Michelle

Michelle Corcoran

Secretary

Michelle Corcoran lives in Victoria, Australia with her partner and their four children.  Shortly after their youngest, Oscar, was born in 2012 he developed breathing difficulties, which left doctors puzzled. Many months and many tests later, Oscar was diagnosed with Dyskeratosis Congenita. Further testing on the rest of the family revealed Michelle and two of her other three children, Nathan, 9, and Heidi, 4, also have this rare disease. In October 2014, Michelle and her two eldest children travelled to the USA to attend Camp Sunshine for the Dyskeratosis Congenita Outreach family weekend and conference. DC patients and their families from all over the world are invited to come together, make strong friendships and support networks and doctors with the best knowledge give informative lectures to the adults, all while the kids are having a special time. This experience left Michelle wanting to help other families, be a voice for Dyskeratosis Congenita and to educate the medical community on this extremely rare, life threatening disease. You can reach Michelle at michelle@dcopacific.org

Tony pic

Tony Bayard

Treasurer (NZ)

Tony Bayard is from Nelson, New Zealand and was diagnosed in 2011 with Dyskeratosis Congenita. Tony’s younger brother Aaron died from this rare disease in 2011, and Tony is passionate about supporting others in his situation and sharing his story to help families in New Zealand, Australia and beyond. Tony is an IT professional who has experience on a number of committees to help drive the development of this small but important group.  Contact Tony at tony@dcopacific.org.

Luke winters profile

Luke Winters

Treasurer (Aus)

Luke Winters lives in Sydney Australia and works as an IT consultant.  He has a keen interest in the various treatments of genetic diseases and contributes to DCOP to support the families affected by Dyskeratosis Congenita. He can be contacted at luke@dcopacific.org

Vanessa Bayard

Committee member

Vanessa Bayard is from Nelson, New Zealand, and was married to Tony Bayard in 2014. Vanessa attended the DCO camp in the USA in 2014 with Tony and Pam, and is inspired by Tony’s determination and positive attitude in the face of his conditions. Vanessa believed the camp to be an invaluable opportunity to build relationships, get support and learn more and hopes to share that with others in NZ and Australia. Vanessa acts as minutes secretary for the committee and can be reached at vanessa@dcopacific.org.

Bridget Dicker

Committee member

Bridget Dicker lives in Auckland, New Zealand, and is Tony Bayard’s cousin. Having lost her cousin Aaron to DC in 2011 she is keen to support her family and others impacted by Dyskeratosis Congenita. Bridget has a background in science, holding a PhD in Molecular Medicine from the University of Auckland. She has spent a number of years volunteering as a Paramedic and works as both a Researcher and a Paramedic in Auckland. Contact Bridget at bridget@dcopacific.org.

Photo of Alice Poulton

Alice Poulton

Committee member

Alice Poulton lives in Melbourne, Australia, and is currently completing an Arts/Science degree at Monash University (majoring in Genetics and Psychology). She has an interest in rare genetic disorders, and has been volunteering at Genetic Support Network Victoria (GSNV) for some time. Alice hopes to provide support and assistance to those affected by Dyskeratosis Congenita.

Dr Paddy Barbaro

Dr Pasquale (Paddy) Barbaro

 Committee member

As well as being part of DCOP’s Medical Advisory Committee, Dr Paddy Barbaro is a Committee member, using his clinical experience and network to support DCOP in achieving its objectives.

Medical Advisory Committee

DCOP is supported by a number of medical professionals who specialise in areas relevant to DC patients. In 2016, our medical advisory committee includes the following people.

Portraits Suneet Agarwal

Suneet Agarwal

Suneet Agarwal, MD, PhD.
Dana-Farber / Boston Children’s Cancer and Blood Disorders Center
Boston, Massachusetts, USA

Dr Agarwal completed his undergraduate education at Brown University in Providence, Rhode Island before undertaking his M.D. and Ph.D. training at Harvard Medical School in Boston, Massachusetts. He carried out paediatric haematology/oncology clinical training at the Dana-Farber Cancer Institute and Boston Children’s Hospital, where he also did his postdoctoral training in stem cell biology. Dr Agarwal is currently an Assistant Professor in Pediatrics at Harvard Medical School, Principal Faculty at the Harvard Stem Cell Institute, and a Staff Physician in Hematopoietic Cell Transplantation at the Dana-Farber / Boston Children’s Cancer and Blood Disorders Center. Dr Agarwal is interested in the mechanisms and therapy of genetic blood disorders, with a focus on telomere diseases.

alan

Alan Glanville

Professor Allan R Glanville, MB BS,MD, FRACP, Medical Director Lung Transplantation, Director Thoracic Medicine, St Vincent’s Hospital, Sydney, NSW, Australia

Trained in Sydney, Australia, Brompton Hospital, London, United Kingdom and Stanford University, California, USA. Now Conjoint Professor of Medicine University of NSW, he sits on the Editorial Boards of the American Journal of Respiratory and Critical Care Medicine, the American Journal of Transplantation, the Journal of Heart and Lung Transplantation and Seminars in Respiratory and Critical Care Medicine. Former Board member and now Past President International Society for Heart and Lung Transplantation, he was Program Chair for the 2013 Annual Scientific Meeting in Montreal, Canada. Past Chair European and Australian Investigators in Lung Transplantation he has authored more than 160 publications including investigator driven global trials of immunosuppression and he has been involved in published global trials of novel therapies for RSV using small mRNAi. He is senior author of the 2015 International Consensus Guidelines for the Selection of Lung Transplantation candidates, and the joint ATS/ERS/JHLT BOS Guidelines recently published in the ERJ. In Australia, he is a Foundation Director of Outcomes Australia, Foundation Member ShareLife Australia and Scientific Advisor to Lymphangioleiomyomatosis Australia Research Alliance which complements work with international LAM groups and as a member of the Rare Lung Diseases Consortiums. Ongoing research interests include definition of chronic lung allograft dysfunction (CLAD) phenotypes, therapeutic strategies for community acquired respiratory viral (CARV) infections in the immune suppressed host, pathogenesis and management of antibody mediated lung allograft rejection (AMR) and innovative antifibroproliferative therapies for idiopathic pulmonary fibrosis (IPF). He is the transplantation head of the Australian IPF Consortium. He has performed numerous Chair and mentor roles to facilitate global awareness and development of a critical mass of trained clinicians to solve problems which beset the lung allograft. In quiet moments, good music, bushwalking and fly fishing bring much joy.

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Pasquale Barbaro

Dr Pasquale (Paddy) Barbaro has completed clinical training in Paediatric Oncology and Haematology through the RACP, and has also completed Haematology Pathology training through the RCPA. He received his medical degree through the University of Sydney, and undertook basic Paediatric Physicians training at Sydney Children’s Hospital. He is currently working as a Paediatric Haematologist at the Children’s Hospital at Westmead while he undertakes a PhD through CMRI and Sydney University, investigating the relationship between Telomere Length and toxicity in Paediatric oncology patients. His areas of interest include Haemophilia and other bleeding disorders, bone marrow failure syndromes and Haemoglobinopathies. You can reach Dr Barbaro at paddy@dcopacific.org.

Alexa Kidd

Alexa Kidd

Dr Alexa Kidd, MBBS, MRCP (UK), MRCGP (UK), MSc

Dr Kidd lives in Christchurch, New Zealand. She trained in medicine in London. Her background was mainly in paediatrics but she also completed General Practitioner training before entering a clinical genetics training programme in Aberdeen, Scotland. She worked as a full-time Consultant Medical Geneticist for Central and Southern Regional Genetic Services in Wellington for nearly eight years. She joined Canterbury Health Laboratories in 2007 as their Consultant Clinical Geneticist. She recently worked in adult psychiatry part‑time for two years in addition to her genetic work. She also runs a small private genetics service (CGNZ Ltd).

Dr Kidd has a very broad range of experience within medical genetics. Her particular interests are psychiatric genetics and neurogenetics (particularly myotonic dystrophy, rare cancer syndromes and telomere disorders). She has considerable experience in dysmorphology, in both children and adults. She is an active member of the Human Genetics Society of Australasia and of the British Human Genetic Society.

Dr Kidd is registered with the New Zealand Medical Council as a specialist in Clinical Genetics. Outside work she is a keen cyclist, tramper and sailor and an advocate for active transport.

Roger Reddel 2016 image

Roger Reddel

Professor Roger Reddel BSc (Med) MBBS PhD FRACP FAA

Roger Reddel is Director of Children’s Medical Research Institute (CMRI), and Lorimer Dods Professor at the University of Sydney. He obtained his medical degrees at the University of Sydney, and then completed his training as a medical oncologist. He obtained a PhD studying cancer cell biology, and then undertook postdoctoral research in molecular oncology at the US National Cancer Institute in Bethesda, Maryland. Roger returned to Sydney to set up a laboratory at CMRI, and since that time has been investigating the cellular and molecular biology of cancer cell immortalization. Much of this work has concentrated on the role of telomeres in cancer. There are three other research groups at CMRI which are also focussed almost entirely on studying telomeres and, together with Prof. Reddel’s group, they all are very keen to do whatever they can to help families with DC and other short telomere syndromes. Prof. Reddel and Dr Barbaro recently wrote an article to raise awareness about DC among specialist physicians in Australia and New Zealand.