Thanks to all our donors who made it possible for Nathalie Cook and Ken Young of MPN AA to present a cheque today for $10,000 to Dr Cavan Bennett and haematologists A/Prof Kate Burbury & Dr Sant-Rayn Pasricha of Peter Mac and WEHI to support their exciting research into PV. We raised over $7000 in our End of financial Year fundraiser, and topped this up with previously donated funds to support this worthwhile research. We are so happy that this MPN research is being carried out in Australia, and are very thankful to the researchers.
The presentations were great – firstly Dr Renee Eslick spoke very informatively about “Diagnosis of MPN”. Sue McConaghy, psychologist, spoke on the topic “This is Not the Life I Ordered”, providing ideas about tools we could use to help manage unwelcome and unplanned events in our lives – relevant to all of us at times! We then broke for a lovely afternoon tea, and reconvened to hear Dr Carmel Sullivan speak about how yoga could enhance our physical and mental health and quality of life. Dr Cecily Forsyth followed, and spoke on the topic “Optimal Management of MPN in Australia”, about the latest research on how MPN patients should be managed, going through the 3 main MPN subtypes in order, but acknowledging the shades of grey that exist, and the need to treat each patient as an individual.
Patients seemed to be very engaged, and there was lots of chat in the afternoon tea break, and also some constructive to and fro between patients during the question time.
SAVE THE DATE. MPN AA has been negotiating with the Leukaemia Foundation and a number of great presenters to hold an MPN Patient information afternoon in Sydney on Saturday 23 February 2019. Further details and opportunity to book a place coming soon.
Sue Taylor and Nathalie Cook from the MPN Alliance Australia, were invited, as guests of the Faculty of Health and Medical Sciences, University of Western Australia, to attend and present at the WA MPN Symposium. Sue Taylor presented on the advocacy of the MPN Alliance Australia whilst Nathalie Cook presented on healthy eating and the microbiome for MPN Patients.
For further information, please visit the following link: http://www.news.uwa.edu.au/2018040910519/visiting-raine-professor-joins-mpn-symposium
The day prior to the MPNAE&I Patient Program in Melbourne, Australian MPN clinicians and researchers met with some US counterparts to share knowledge and ideas. In the photo below, Dr Ruben Mesa speaks about the unmet needs of MPN patients, particularly those with Myelofibrosis. He discussed the role of Ruxolitinib, Interferon and clinical trials. He addressed the question of what would constitute failure of Ruxolitinib treatment, and when it might be appropriate to continue Ruxolitinib despite suboptimal symptom or spleen control, or hematological toxicity in this group of patients. Thanks again to Ann Brazeau and MPNAE&I for making this possible.
The Australian MPN community was given a wonderful gift on Friday 28 April by Ann Brazeau and her team from MPN Advocacy and Education International, together with Drs Ruben Mesa, Laura Michaelis, and Raajit Rampal from the US; and Drs Cecily Forsyth, Steven Lane, Kate Burbury, David Ross, and Wendy Erber, and Andrew Lim, (standing in for Prof Andrew Grigg), from Australia.
Months of planning culminated in an outstanding educational event for the group of over 150 Australian MPN patients, caregivers and haematologists.
We all expected great things from the US contingent, and they certainly delivered. We were also extremely impressed by the presentations from our home-grown haematologists. The level of passion, dedication and care for patients was very evident in each and every one of the presentations.
After the formal presentations, patients and caregivers were able to ask questions of the presenters in disease-specific break-out sessions.
I think for patients and caregivers ranging from the newly diagnosed to the old hands, everybody learned something, and valued the opportunity to share with patients and professionals during breakfast, lunch, and the wonderful Mix and Mingle event at the end of the day. If we didn’t finish all that wonderful food, it was only because we were so busy talking!
Given the amount of information which was presented on the day, I am looking forward to seeing the video of the presentations, to have the opportunity to revisit it.
Together with my MPNAA colleagues, I felt privileged to have had the opportunity to listen to the clinicians in their meeting on the Thursday afternoon, as we gained insights into the challenges of diagnosis and treatment of these complex blood cancers.
Thanks so much to Ann and Marina (as well as Kathleen behind the scenes) and the wonderful doctors who were willing to cross the vast Pacific to share their knowledge. Thanks also to all the wonderful clinicians and researchers who came from far and wide across Australia. Together you enlightened, empowered and entertained all those who were lucky enough to be present!
I feel so inspired.
Videos of the presentations are available here.
By Ann Brazeau, CEO, MPN Advocacy and Education International
MPN Advocacy and Education International hosts several patient/caregiver educational programs per year. Although most take place in the United States, their goal to expand to other countries where MPN groups are interested in partnering to benefit their MPN Communities has been a priority.
Through collaboration with the MPN Alliance Australia, the first patient/caregiver program was held in Melbourne on the 28th April, 2017. MPN specialists from Australia joined U.S. specialists to share up-to-date, relevant information to over 150 patients and caregivers.
Empowering patients with the knowledge they need to better understand the complexities of MPNs, is what MPN Advocacy and Educational International hopes to achieve at these events. Partnerships are essential to the success of these very important programs. Imparting valuable, reliable information to the MPN Communities around the world helps bridge the gap to understanding what is being done, and identifying unmet needs.
In the early days of my work in MPN little was being shared among researchers and academic institutions. Today, it is a common practice. Recognizing the importance and value in collaborating, researchers and clinicians are much more amenable and grateful for opportunities to share their experiences and findings. Thus, a physician/researcher meeting was held the afternoon before the patient event.
A half-day strategy meeting with the MPN Alliance Australia proved to be meaningful and productive. Their dedication and commitment to the patients and caregivers in Australia is evident in the many hours they volunteer each week.
We are proud to have been a part of this experience and were happy to pull this event together with our partners, MPN Alliance Australia.
The MPN Alliance Australia works in partnership with the Leukaemia Foundation, who manage the dedicated MPN Fund and provide governance.