History of MPN Alliance Australia
Extract from the speech given by Jolanda Visser at the MPN Horizons conference in 2016.
“Hello everyone, my name is Jolanda Visser and I am from the MPN Alliance Australia. I would like to tell you about the set up of this patient advocacy group of volunteers.
- Lara Chapman was diagnosed with ET in 2008. After a few years her diagnosis was changed to PV.
- Lara, as most of the MPN AA members, was struggling to find relevant up to date information on MPN’s.
- In 2013 she contacted the Leukaemia Foundation Queensland who assisted with the establishment of a support group.
- In 2014 Lara started a fundraising campaign and managed to raise $40,000, of which $24,000 was donated to a MPN Researcher in Queensland.
- In 2015 Lara reached out to members of the MPN Community to get input to where the remainder of the funds should be put towards
- A small group of MPN patients across Australia met via a Skype call and all shared the same frustration of how they were diagnosed and the fact that they struggled to have access to up to date Australian information.
- We all agreed we should continue raising funds and find ways of making a difference to the MPN Community.
- This was the start of the MPN AA.”
Establishment of the MPN fund within the Leukaemia Foundation
Lara Chapman and Bill Petch, CEO of the then Leukaemia Foundation of Queensland, at their 2014 meeting to establish the MPN Fund within the Leukaemia Foundation, started with funds previously raised by Lara.
MPN AA Founder Lara Chapman’s presentation to the 2017 Melbourne MPN Patient Program
Watch Lara Chapman’s presentation to the 2017 Melbourne MPN Patient Program, explaining her motivation and actions in setting up MPN AA.
MPN Charity Dinner, 11 August 2018 – Jolanda Visser’s speech
“When Trevor Holst, last year, said he wanted to help support by raising funds and create more awareness for MPNs, I never imagined it would be in this fashion.
So here we are! When we put the run sheet together for tonight, I decided I only need 15 minutes to give you a brief introduction to MPNs. But now I look around I realize I need at least 15 minutes to thank you. I see friends surrounding me and am overwhelmed by your support. Each one of you here tonight has made this event possible. Without your support and generosity, we would not be gathered here tonight. So I would like to thank you and all the sponsors from the bottom of my heart.”
For Jolanda’s full speech, see MPN Charity Dinner Jolanda’s speech
$35,000 donation from Lara Chapman and the MPNAA
Pictured here is Dr Steven Lane, Head of Cancer Program QIMR Berghofer Medical Research Institute, receiving a donation of $35,000 from Lara Chapman and the MPN AA in September 2019.
Lara has announced this was her last official duty with MPN AA. She has said “I would like to take this opportunity to thank each and every donor, supporter and the people that I have worked with over the last seven years:- MPN advocates worldwide, MPN AA colleagues past and present, Leukaemia Foundation, MPN Research Foundation, University of Queensland Diamantina Institute, MPN Advocacy & Education International, haematologists, friends and family members, for your support in believing in the idea of establishing the MPN Fund and MPN Alliance Australia to benefit the MPN community. I am proud of the platform that has been created to increase awareness, the useful resources available on the MPN AA website and importantly the valuable contribution to MPN research.”
We wholeheartedly wish Lara all the best in her future endeavours, including her wonderful painting. We salute Lara for her determination and for all the hours of work she spent in establishing MPN AA, as well as her fundraising efforts. She leaves a lasting legacy.
See full post here.