Adult Growth Hormone Deficiency Aware
AGHDaware is an organization which has been created in 2006 to:
- Raise awareness in Australia of Adult Growth Hormone Deficiency (AGHD).
- Develop a Brisbane based support group for people suffering from AGHD, and their carers.
- Perform a needs analysis of patients suffering from AGHD.
- Provide hope and support for Australian AGHD sufferers, by working towards providing the resources they need to move forward in an overwhelming climate of despair, where the treatment they need can be prescribed, but is often financially unavailable due to current lack of government subsidy.
- Provide advocacy for AGHD patients to influence medical, scientific, political, commercial, academic, social and legal institutions to foster change required to enhance quality of life for the AGHD community.
- Foster co-operative links with existing organizations which offer support for patients with brain tumours in general, and pituitary dysfunction in particular, to ensure specialist knowledge related to AGHD is widely disseminated and that resources created for AGHD adults can be widely accessed.
- Provide a spotlight on moves towards application for Pharmaceutical Benefits Scheme subsidisation of GH treatment for AGHD.
- Create mechanisms by which completed research, which has potential to advance knowledge of the AGHD condition, is published and made available to the medical, political and commercial bodies which can use it optimally in the case for subsidisation of treatment for AGHD.
Articles
Founder
AGHDaware is the initiative of Jennifer Wallace, Neuroendocrine Scientist and GH researcher for close to 20 years.
Jennifer began her GH research in St Thomas’ Hospital London in the 1980’s together with Ross Cuneo who characterised the syndrome of GH deficiency in adults. She performed the first pharmacokinetic studies to discover the absorption characteristics of recombinant human growth hormone (rhGH) in human subjects. This began a long journey with the adult growth hormone deficient patients of the world. The collaboration of Wallace and Cuneo has resulted in a number of landmark studies in clinical endocrinology. They have gained international recognition for their advancement of knowledge of biological actions of GH and benefits of treatment with GH for those who suffer with AGHD. Jennifer set up the Metabolic Research Unit at Princess Alexandra hospital in 1990, a clinical research facility devoted to high quality experimenter driven research. Under her direction this unit has generated a wealth of high quality publications which have explored GH regulation and action, in normal ageing, athletes, AGHD, Acromegaly (excess production of GH from a GH secreting tumour), and chronic liver disease. Jennifer was a major contributor to the Australia wide study of GH treatment in AGHD, which resulted in introduction of approval for GH to be prescribed for treatment of organic Adult GH deficiency in Australia, and has contributed to a number of industry reports and efforts towards achieving subsidisation of treatment for AGHD in Australia.
In the mid 1990’s Jennifer returned to London and set up a second testing facility in St Thomas’ Hospital London funded by the International Olympic Committee and the European Union. She performed a number of world class studies in this facility, developing a preliminary methodology for the detection of GH abuse in athletes, exploring the role of melatonin in GH regulation and action, and following up a cohort of AGHD patients 10 years after their commencement of GH treatment. Jennifer published the first papers in the world on comprehensive studies of GH doping in athletes. She was a major contributor to the GH 2000 project, an international project granted funding of $3,000,000 by the IOC and EU to develop a test for GH doping in time for the Athens Olympics in 2004.
On her return to Australia Jennifer was awarded a prestigious Grant from the National Health & Medical Research Council of Australia, as joint principal investigator with Ross Cuneo. This grant enabled the Metabolic Research Unit to further intensively study AGHD subjects in Australia. This study was the first of it’s kind in the world and will push forward the frontiers of knowledge to explain the practical day to day challenges which these individuals face with respect to intermediary metabolism and thermoregulation. This study has been completed and Jennifer is devoted to ensuring the results are published in high quality journals and used to advance the case for subsidisation of GH treatment in Australia and to assist in the education of GP’s and Endocrinologists worldwide.
Jennifer was also a co-investigator with Ross Cuneo on two studies to advance treatment of Acromegaly in Australia. Jennifer played a major role in these studies and was the sole Australasian representative to input into protocol design in a meeting of worldwide Acromegaly researchers conducted in Barcelona in 2004. These studies have been completed and considered to be landmark studies in Acromegaly and have widened the treatment options for this rare condition.
Jennifer was a founding member of the Australian and New Zealand Acromegaly Registry (ANZAR) and a major Australian database of growth hormone deficient adults. These databases have had a major impact on research into these conditions in the southern hemisphere.
In collaboration with the Australian Nuclear Science and Technology Organization (ANSTO), Jennifer has further explored options for future treatment of Acromegaly by delivering small radioactive molecules to specific tumour receptors. Jennifer supervised Dr Sarah Olsen, Neurosurgeon, to perform the preliminary stages of this work. The world class nature of the project was validated when Dr Olsen was awarded first prize at the Australasian Conference for presentation of the work. Jennifer was recently sought out by the Australian Proteomic Analysis Facility (APAF) in Sydney to collaborate with them on further avenues to detect GH doping in sports using proteomic techniques. Results from a preliminary study have been submitted to the World Anti Doping Agency (WADA) for consideration of funding.
She has been heralded as a “leading academic in her field” by the University of Queensland.
Jennifer was Clinical Research Director of the Metabolic Research Unit, Department of Medicine, University of Queensland, Princess Alexandra Hospital, Brisbane Australia, until the end of 2005. She is currently devoting her energies to her six year old son, submission of her PhD on detection of GH doping in sport, and advocacy for and support of Australians suffering from Adult Growth Hormone Deficiency and their carers and supporters, and exploring avenues for continuing funding. She is based at Logan Hospital, Brisbane Australia in the Griffith University Learning Unit, as part of the Neuroendocrine Research Unit headed by Professor Rick Jackson. Her horizons have been greatly expanded by Professor Jackson’s current research into the Neuroendocrinology of Love and Commitment.
A full CV with publications is available for further information.
Disclamer
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