Annual Report 2018/19

I am pleased to present the annual report of the activities of the Australian Pituitary Foundation for the period July 2018 to June 2019, also representing the first full year of my chairmanship.

Activities
• Melbourne education seminar – this was held in early in 2019 and was attended by over 50 peoples. The majority of attendees were patients and their families with nursing and allied health staff making up the rest. A highlight of the night was the presentation by a patient member, Kumar Vaidyanathan regarding his patient journey. Kumar spoke with passion and honesty, expressing the aftershock events occurring following diagnosis, treatment and recovery.

• Patient Liaison Support Coordinators – Establishing the role of Patient Liaison Support Coordinators (PLSC) spread across Australia thus providing condition-based access to those looking for specific support for individual pituitary conditions. All PLSC are current pituitary patients able to give compassion and empathy to those needing support. We have appointed seven PLSC covering Cushing’s disease, hypopituitarism, non-functioning pituitary adenoma and acromegaly at present with more to come.

• Patient Information Sheets – Funding has been applied for and received to review and update our library of information sheets in line with up-to-date information. There are around 30 publications to review and it is anticipated this will be completed by June 2020. These will be available on-line for download when each sheet is completed and members will be informed by email when this is available. They will also be available for individual wards/clinics upon request.

• Participated in a taped interview in conjunction with Pfizer Global to highlight the diagnostic journey of a patient (Malini Raj) and the importance of patient advocacy, voice and patient support groups.

o https://www.gethealthystayhealthy.com/en-au/articles/10-benefits-of-a-patient-support-group;
o https://www.gethealthystayhealthy.com/en-au/videos/how-i-overcame-my-diagnosis-rare-disease

• Raised just under $13K through participation in the Port MacQuarie Ironman with documentation of the journey paralleling the daily struggle of those living with pituitary conditions.
o “…. People speak in awe of those who are able to complete the Ironman distance, however the struggles through training and participating in this event is barely a shadow of the struggles of those living with pituitary conditions. It is during the long exhausting hours of exercise that the participants rely on their pituitary gland to secrete adequate amounts of cortisone and growth hormone, and it is the lack of adequate secretion of such hormones that makes everyday life a struggle for pituitary patients….”

• Widened the reach and voice of the APF through an increase in financial membership to 68. Including Friends & Supporter, our community now reaches 330.

• Establish important strategic partnerships through the corporate reach of the board with pro-bono legal (King & Wood Mallesons) and accounting (Doquile Perrett Meade) relationships, and probono office space (Signus Australia). In addition committed long-term partnerships with Ipsen, Pfizer, BrainLab Australia, the Epworth Foundation and St Vincent’s Private (Melbourne).

Goals

• Provide regular patient education seminars three-times a year – a Sydney session was held with over 100 people attending in September. This will be included in the 2019-2020 report. There are plans for a Brisbane seminar in March 2020, and Perth in June 2020.
• Complete the up-to-date reviews of the patient resources that were a hallmark of the APF previously.
• Establishment of a new-diagnosis pituitary tumour patient resource akin to those utilised in brain tumour groups.
• Increase the reach of the APF through the further recruitment and training of condition specific Patient Liaison Support Coordinators.
• Lobby for government involvement and funding.

I am excited regarding the building blocks that continue to be set in order to establish the long-term success of the Australian Pituitary Foundation and look forward to carrying this on towards to the following year. As a measure of my personal belief in our future, I am also pleased to announce that effective this month, I have resigned from my role as Neurosurgeon at St Vincent’s Public Hospital (Melbourne) to commit one day a week towards the running of the Australian Pituitary Foundation. This will, of course remain pro-bono work manifesting a significant personal investment to the Foundation.

Yi Yuen WANG.