Barbeque Saturday 28th Feb 2009

A BBQ was held in the western suburbs of Brisbane in February with a good attendance. Russ Fairweather, a director from Sydney flew up for the day to meet members.  Parents Richard & Carolyn attended with their children and had everyone spell bound while listening to their story of raising their child Siobhan who was born with congenital hypo-pituitarism.  Most attendees had acquired this thru surgery at an adult age and were horrified that little children also had to manage hormone replacement.

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Educational Presentation & Social BBQ

for families with Children affected by Pituitary Disease & Disorders

Thanks must go to Dr. Andrew Cotterill, Paediatric Endocrinologist from the Mater Children’s Hospital in Brisbane.  Many topics were discussed ranging from how to administer medication and to attend to your child while waiting for the ambulance to arrive to facts regarding adolescence and puberty. Dr. Cotterill also facilitated a discussion group with the families, catering not only for medical questions, but also allowing the families to explore emotional issues associated with raising a child  with pituitary illness. I would like to thank Dr. Cotterill for his continued support of the work the Foundation is trying to achieve in facilitating education and establishing a dedicated support  group for parents and children.

Great to meet each other!

The outcome of the day was that all agreed it was very informative and beneficial.  The kids got to meet one another and have fun (including ice cream and jelly!) and the parents were able to exchange information and form connections.  We all agreed we will continue to meet a couple of times a year.

 

 

At this point can I please implore Paediatric Endocrinologists, Physicians, GP’s and Neurosurgeons to tell their families about the Foundation and this initiative  in Brisbane.  Expressions of interest are sought to facilitate paediatric and family activities in the other states as well.

 

Thank you to Merck Serono which assisted with costs to run the day.

McCafe in Nathan Street, Townsville

The Gang at McCafe on Sunday

This was well received and social support in NQ was discussed with enthusiasm.   We hope to attract more members so that we can expand our support activities in North Queensland. 

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Queensland members and their families, along with some new enquirers really enjoyed a special day on Saturday 5^th April, 2008.  

We had a crowd of around 30 people get together, which included a member from Townsville who flew down specially, a member from Rockhampton who was visiting Brisbane for tests, a new member joined us, and a guest who recently had surgery attend.  

 

To also make this a special day APF members were very fortunate to meet Ms. Ruth Huwer who is the Qld & Northern NSW President, and Mr Allen Hibberd, who is the newsletter editor for the Turner Syndrome Association of Australia.  Ruth, who has Turner Syndrome did a wonderful presentation using powerpoint.   I was most impressed with the presentation which covered many aspects of the condition including what it is like to have Turners.  Ruth shared with us the social impact, the psychological impact – also everyday challenges met by children/women with Turners – including the perceived perception from people who do not understand the condition.  Allen and Jo-Anne have raised a daughter with Turners, so Allen shared his experience and also spoke of the Turner’s newsletter which he puts together very professionally.  Thank you to Ruth, Allen and Jo-Anne for attending.

 

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Qld members enjoyed another great luncheon

The Queensland Branch of the APF enjoyed a great day together at Samarco Restaurant, Jindalee, Brisbane.   The luncheon was funded by the APF with the kind assistance from pharmaceutical company, Ipsen Pty. Ltd.  Besides from the usual crowd we welcomed new members which is always a highlight!   Our attendees ranged from people seeking diagnosis, the newly diagnosed awaiting surgery, the person managing their illness with medication, the successfully treated and the person furthering their initial treatment.  Wow!

It never ceases to amaze me the resilience of people who are challenged by health concerns, particularly those with pituitary disease because of the wide range of associated problems associated with the disease.  How positive, inspirational and supportive some can be even though they face their own challenges. 

Linda Spitzer, co-ordinator of the Brain Tumour Support Service, Qld Cancer Fund, spoke to our members of the services the QCF provides.  The resources she brought with her proved to be of great interest to our members.  We would like to thank Linda very much for donating her time to speak to us.