A number of people attended the Annual General Meeting of the Foundation, held on Sunday 23 August 2009 at the Oaks Plaza Pier Hotel, Glenelg, South Australia.  This meeting which was held in conjunction with the "Pituitary by the Sea" Seminar.   It was very encouraging to see Directors, State Co-ordinators and helpers all together.  Two of these helpers who were present and continue to play a leading role in the design and formulation of our database and website were Barbara Elliott and Kathryn Skelsey.   Long standing member Jack Kagan who is our contact for Growth Hormone issues and advocacy was also present.  Thank you to members from the other states who also attended.

The meeting was chaired by Noel Hickey who read a detailed Chairperson’s Report which covered the normal yearly activities and seminars as well as sponsorship, database and website developments and paediatric membership and development.  Special recognition was given to Jill Murray who has retired as a Director and Victoria Coordinator.

Following the presentation of an audited Treasurer’s Report, the Election of Directors took place.  Proxy voting papers received were all unanimous in their selection.  A motion was moved and seconded, with all in favour, that Russ Fairweather, Sue Kozij, Eric Kozij, Noel Hickey, Loretta Schar, Maryann Paterson and Lisa Clancy be elected as Directors for the coming twelve months. The newly elected Directors were shown support by a round of acclamation.  The continuing efforts of the existing State Coordinators Loretta Schar (SA), Emily McKenzie (WA) and Sue Kozij (Qld) were acknowledged, and a warm welcome was extended to Melissa Syme (TAS) and Kellie Dines (VIC - not in attendance).

Introducing your new committee L to R: Loretta Schar, Russ Fairweather,
Maryann Paterson, Lisa Clancy, Sue Kozij, Eric Kozij and Noel Hickey

A major item addressed under General Business was the honorary appointment and acceptance of a team of specialised Medical Advisors to provide professional guidance to Directors and Coordinators.

• Professor Stephen Boyages, Endocrinologist, Westmead Hospital, Sydney;
• Associate Professor Patricia Crock, Paediatric Endocrinologist, John Hunter Children’s Hospital, Newcastle;
• Professor Ken Ho Garvan Institute of Medical Research, St Vincent’s Hospital, Sydney;
• Dr Nicholas Maartens, Neurosurgeon, Royal Melbourne Hospital;
• Dr Sarah Olson, Neurosurgeon, Princess Alexandra Hospital, Brisbane;
• Loula Tsitsis Psychologist, Private Practice, Adelaide.

Regards
Noel Hickey

14 state reps, directors and volunteers of the APF met on a freezing day in Adelaide to review some of the issues relating to telephone counselling and how to look after ourselves as both patients and carers.

The day also included information on the do’s and don’ts regarding peer support, legal and privacy matters.

The session got off to an interesting start with all of us introducing ourselves and giving every one a short history of our illness and diagnoses.  What an exciting time it was for all key personnel to have the opportunity to meet the face behind the voice on the phone.

The day was ably guided by Lorraine Lane, B Ed, M Ed Lead, Grad Dip (RE), Grad Cert Spec Ed, Grad Dip Couns who is a specialist in this area.

For me the most important take home message was that although we are all dedicated to the cause, we only have limited time and energy.  We need to protect this asset.  Sometimes this means being a little selfish, and tell ourselves that it is all right to rest and have some me time.  We all live such busy lives, with family, work and surviving our illness that we forget about ourselves.

If we are totally exhausted all the time we cannot assist any of our fellows, or our families.

There are a number of main points raised with regards to telephone counselling:

• Listen, listen and then listen again. Try to remove yourself and your issues and hear what the other person is saying.  Each person’s story is unique.
• Don’t give advice.  You can only speak from your experience.  I did “X” and it helped me greatly. Why don’t you discuss this with your GP or specialist?
• I have trial led the following drugs for the following reasons.  They are available, but you need to discuss any prescribing with your doctors.
• We are not a referral service.   Each and every doctor has a different approach.  You as the patient have a right to ask questions, and if you don’t get answers, you can ask to be referred on.  We are entering into a long-term partnership with our doctor and we need to be on the same wavelength.
• Suggest that the person joins, and then comes to various APF functions.  One of the many ways we can help people is by encouraging them to talk to other people who have the same health problems.

As always the best part of the workshop training experience was the ability to catch up with people who I have not seen for some time, and also to meet new people.  I had the pleasure of meeting our new directors and state coordinators including volunteer Barbara Elliott, database and website assistant – neither Barbara nor her family have been affected by pituitary disease however Barbara is very pro-active in volunteering and working with the Foundation and in fact has been with us for over 4 years now.  It was also great to meet Kathryn Skelsey again, long term member and previous Director - Kathryn will be very involved with support when our new member’s log in to the website is released.

Our illness often leaves us without the desire to go out.  Being social and active, and keeping a positive approach is the best thing you can do for yourself.  Keep your chin up, and we will see you at the next meeting.

Jack Kagan, long term member, past Victoria assistant and adult Growth Hormone advocate

Health Matters

Professor Ken Ho, Head of the Pituitary Research Unit at the Garvan Institute once again assisted the Foundation in promoting “Pituitary Awareness” on the show Health Matters with Dr John D'Arcy.   John’s show is aired on Sunday mornings between 8-9am on 32 stations around the country.   The interview was held during Pituitary Awareness Week.   Please listen to the interview here

Community Festival

In Brisbane, on Saturday 25^th July, Eric & Sue Kozij set up a static display at a community festival which attracted approx 18,000 people through the gates.  Centenary Rocks! Festival accommodated a special community health section, where other organisations, such as Lupus Association held information stalls.

The Pituitary Research Unit at the Garvan Institute of Medical Research conducts research into the diagnosis and medical treatment of pituitary disease, the role of pituitary hormones in health and disease, and the use and abuse of pituitary hormones. The unit is currently undertaking research to understand how growth hormone and testosterone work together to optimise muscle growth and strength.

New studies will investigate how growth hormone and sex steroids affect whole body and liver fatty acid metabolism.  

The day to day running of the Foundation is achieved through the dedication of volunteers who are themsleves often also pituitary patients.  There are no paid employees of the Foundation and all the State Co-ordinators and other office holders give generously of their time to ensure the Foundation can offer a high quality service.

While we advertise for key positions, such as a State Co-ordinator or Newsletter Editor from time to time, there is also an ongoing need for administrative support in most parts of the country.  Please review the Support pages for your State to see what particular skills may be required.  Or drop a line to your State Co-ordinator if you can only spare a few hours here and there to assist with arranging a local event or mail-out.

Enjoy the satisfaction of connecting with others in a similar position, as well as

• developing new skills and/or enhancing exsiting ones
• enjoying a variety of work and life experiences
• being part of creating change in an important area, and 
• having satisfaction in knowing you are helping other people who are also going through a life changing experience. 

If this is something that you or someone you know would like to be part of, please contact your State Co-ordinator or the APF on 07 3376 2083 or email the support team to find out more.