'The Pituitary Connection'

www.pituitary.asn.au

Dear APF Community,

I am pleased to share some important updates on the work we have been doing to strengthen the Australian Pituitary Foundation (APF) and our impact on the pituitary community.

One of our key priorities has been ensuring the long-term sustainability of APF. As part of this, we have been reviewing our Board structure, composition, and succession planning to ensure we are best positioned for the future. I am delighted to share that Rob Price will step up as Co-Chair alongside me for the immediate term until the AGM, and together, we will lead the organisation as we continue to deliver on our strategic objectives. We have also undertaken a review of our Board composition, identifying strategic gaps that we will look to fill shortly, ensuring we have the right mix of skills and expertise to drive APF forward and best serve our community.

In a major win for patients, our advocacy efforts have successfully led to Osilodrostat (Isturisa) being listed on the Pharmaceutical Benefits Scheme (PBS) from 1 March 2025. This means Australians living with Cushing's disease will now have affordable access to this life-changing treatment, saving them tens of thousands of dollars per year. Our work in this space included direct engagement with the Minister's Office, reinforcing the critical role of the patient voice in shaping healthcare policies. While this is a significant step forward, there is still much more to be done to improve the diagnosis, treatment, and long-term care of those affected by pituitary conditions.

Beyond our advocacy, community connection remains at the heart of what we do. We have hosted several social catchups, offering our members the opportunity to connect with others who truly understand their experiences. These gatherings are a vital part of APF's mission, ensuring that no one feels alone in their journey.

To further strengthen our ability to support the community, we are also expanding our Medical Advisory Board to include additional medical and allied health professionals. This will ensure we have access to a broader range of expert advice, enabling us to better advocate for patients, provide up-to-date information, and develop more robust support initiatives.

Looking ahead, the Board will be coming together in May for a Strategy Day – a crucial opportunity to reflect on our achievements, identify gaps and opportunities, and shape the roadmap for APF's future. Also in May, we will be running our annual Giving Day, which was a phenomenal success last year, raising $50,000 to support GP education programs. We are excited to build on this momentum and make this year's Giving Day even bigger and better—stay tuned for more details!

As always, we remain deeply grateful for the ongoing support of our members, volunteers, and partners. Your engagement, passion, and generosity continue to drive the Foundation's work forward. Thank you for being part of this journey with us.

Malini Raj

Co-Chair, Australian Pituitary Foundation

Dr Carmela Caputo
Board Member

We're further strengthening our medical expertise with two endocrinologist nurses joining our Medical Advisory team this month – Kat Prior, an Endocrinology Clinical Nurse Consultant at John Hunter Children's Hospital in Newcastle and Krisztina Toth, an Endocrine Nurse with over 15 years' experience from the St Vincent's Hospital at the Garvan Institute of Medical Research.

We are also seeking additional specialists, including GPs, ENT Surgeons, Psychologists, Ophthalmologists and a Women's Health Specialists to join our Medical Advisory Committee.

Kat Prior
Endocrinology Nurse Consultant

Krisztina Toth
Endocrine Nurse

The Australian Pituitary Foundation's advocacy has helped led to the PBS listing of a new Cushing's Disease treatment.   

Australians living with Cushing's Disease can now access Osilodrostat (Isturisa), thanks to our lobbying of the Federal Government.

Click below to find out more about this life-changing development.

In 2022, a 'paint-your-partner' date night led to a portrait my husband created—a portrait of a stranger. A stranger with a moon face straight from an Enid Blyton book. It wasn't an affair, but a stark, visual representation of Cushing's Disease, a degenerative pituitary condition that had hijacked my body, sending my cortisol levels soaring.

Rewind to 2019. In my early 30s, I was thriving on the outside, yet severely stressed inside. Leading a non-profit, building a vibrant life in Melbourne after years in India, grieving the breakdown of my spiritual community and death of my mother. Three years later, an insidious cascade of symptoms transformed me, inside and out, until I was unrecognizable.

By making a single or regular gift to APF, you'll be contributing to critical research into the screening, diagnosis, and treatment of pituitary conditions, as well as helping us to raise much-needed awareness, disseminate important information and provide ongoing support to patients and their families.

We sincerely appreciate any amount you can give.  All donations over $2 are tax-deductible.

In 2024, APF raised $30,000 to fund GP education sessions.

The first session was held in Brisbane on 15th February, where GPs spent the day at the W Brisbane Hotel being informed on the latest developments in diagnosing pituitary conditions. The Mater Hospital assisted APF in organising the event and getting the word out to GPs.

We know that GPs play an important role in the journey of pituitary patients and their families.

Participating GPs hear from pituitary doctors, gaining deeper understanding about diagnostic approaches and advances in the treatment of pituitary conditions. They also receive professional development points.

APF's next GP education session will be held at the Pullman Hotel on the 3rd May. St Vincent's Private Hospital in Melbourne is assisting APF with attracting the best speakers to update GPs on the latest information on pituitary conditions. 

Patient support is our number one priority at APF. Over the last few months, we have developed a range of new fact sheets, which you can access via our website https://pituitary.asn.au/information-resources/

Questions to Take to your first Specialist Appointment

Minimising Trauma in Paediatric Blood Collection

Toilet Training challenges for children with AVP-D

Transitioning from Paediatric to
Adult Care

Exercise and Physical Activity

Maintaining Heart Health

Fertility and Pregnancy

Gut and Colon Health

Adrenal Crisis

Bone and Joint Care

Mental Health and Pituitary Disorders

Nutrition and Diet for Pituitary Health

Understanding Pituitary Surgery

Sleep Management Strategies

We're pleased to announce that we have re-signed our partnership with Go Do Good, an Australian business specialising in unique Australian-designed jewellery, gifts, and Christmas decorations.

APF members can receive a discount on the 'Hope Dandelion' range, by using APF30HOPE, when purchasing any piece from the range directly from the Go Do Good website.  A portion of the sale will go directly to APF to help fund critical research into the screening, diagnosis, and treatment of pituitary conditions, as well as helping us to raise much-needed awareness about these conditions.

Explore our range of tees, totes, and stress balls, designed to raise awareness, and provide valuable support, for patients living with pituitary conditions, and their families.  With all profits from each purchase going directly to the Australian Pituitary Foundation, you'll have comfort in knowing that you're helping us to provide vital funds to support research into the screening, diagnosis, and treatment of pituitary conditions.

To order your APF merchandise, simply email support@pituitary.asn.au

Don't forget to send us your photos supporting APF!

PO Box 909 Macleod West VIC 3085

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