As we near the end of the financial year, we look back over the past 12 months with many exciting highlights to share; the celebration of our 10th Anniversary, significant clinical trial milestones, completion of the new office space and launch of two major research projects.

We currently have 138 patients on clinical trials: across 24 active trials. This is the largest number of patients for the team, and they are doing an excellent job of managing this busy schedule, with Manager Jarod Horobin at the helm.

I would like to take this opportunity to personally thank the patients currently participating in clinical trials. We understand the time commitment and disruptions to your day-to-day lives. We believe clinical trials are an important way to progress medical discovery – we hope you share this mission too.  

Clinical trials have the power to make

‘blood disorders a thing of the past’

Our research team is reinvigorated by two major initiatives, including the ‘Validation of Enhanced Potency of Stellabody Technology in Chronic Lymphocytic Leukaemia (CLL) Patients’ with Burnet Institute and AUSNBled Bleeding Disorder of Unknown Cause (BDUC).

Burnet Institute Research Project Update

Chronic Lymphocytic Leukaemia (CLL) is a type of slow-growing leukaemia that has leukaemic cells such as CD20 on the surface of B lymphocyte cells (white blood cells). The purpose of this project is to assess the ongoing evolution of the Burnet Institute’s Stellabody® technology and its potency in blood samples from patients diagnosed with CLL.

Six months into the initiative, we are pleased to share key results described in the progress report. Stellabody® has indicated a higher killing potency, meaning a smaller amount of the drug is necessary to exert its beneficial effects on targeting CD20 expression on leukaemic cells.

AUSNBled Bleeding Disorder of Unknown Cause (BDUC) initiative

The planning stages of AUSNBled Bleeding Disorder of Unknown Cause (BDUC) have the team buzzing. The collaborators met in Melbourne in early May to continue to define the different work packages across the medical specialties, including; haematology, gynecology and obstetrics, haemophilia, and oncology.

The key objective of this research is to create a new classification for bleeding disorder patients, and to identify more effective treatment strategies.

We hope the outcomes of our current research provide greater support for blood disorder patients and their families.

In the community engagement space we are rallying around our fundraisers as they represent PBI’s purpose in the community. It was impressive to see Kathryn Robinson host an event in April in support of factor V Leiden research.

Kathryn lost her son in 2021, at age 15, as he presented at Joondalup Hospital emergency department with undiagnosed blood clots. Graham didn’t survive the medical episode and later found out he had the genetic disorder, factor V Leiden, also carried by Kathryn and her youngest daughter. Alongside her team, Kathryn will participate in the HBF Run for a Reason in memory of her gentle, supportive, and caring son.

20 Years and Counting – Prof. Ross Baker & David Sneddon

We have an important patient story to share in this letter, as August 2024 marks twenty years since I met our CEO, David Sneddon.

David and I have a unique bond spanning the past twenty years – and a passion to improve the outcomes for West Australians living with blood cancer and other blood disorders. David knows firsthand just how serious and terrifying a blood clot can be and the importance of a timely and accurate diagnosis, with quality care and treatment. His experience gives him the drive to help others who are also living with similar conditions.

For almost one in four people who are affected by a pulmonary embolism (PE), a blood clot in the lung, there are not any symptoms before death. It’s a confronting statistic that David Sneddon the CEO of Perth Blood Institute knows all too well.

He knows it well because he’s the CEO of our innovative organisation who research blood conditions. David also understands because he could have been part of that statistic.

In 2008, while living in Singapore, David started coughing up blood which lasted for 24 hours. He was admitted to hospital and was initially diagnosed with bronchitis, despite obvious PE symptoms. During the night, while kept for observation, his condition deteriorated so considerably he was critically close to death. It wasn’t until a CT scan was performed and the clot was discovered and treated. 

It’s an experience that left David’s faith in the medical system shaken and re-connected him to my haematology practice in Perth. David had previously been a patient after suffering a deep vein thrombosis (DVT) in 2004, living in Hong Kong. When he wanted an expert opinion following the clot on his lung in 2008, he returned to Perth for further treatment.

In 2022 David was announced as the CEO at Perth Blood Institute, a patient, and a leader, with a strong personal connection to the cause.

“As a result of my life-altering experience, I have a passion to see advancements in translational medical research into blood disorders and cutting-edge clinical trials that can usher in new treatments and therapies for people living with blood disorders,” - David, PBI CEO

We are both committed to bringing the best clinical trials to Perth and conducting leading medical research here. We are determined to see our state become a research capital for blood disorders and to give new hope to patients through revolutionary treatments – we can do this with your help and generosity.

I understand that opening your wallets in these challenging financial times is even more meaningful and I appreciate your kindness with the current cost of living situation.

Perth Blood Institute would not exist without the support of your donations, even the smallest of contributions help our mission, and I personally thank you for the role you play in the expansion of our research program.

Kind regards, 

 

Professor Ross Baker

Chair, Perth Blood Institute