Lots has been happening with Ur the Cure over the past couple of months! Meeting with politicians, media coverage, liaising with patients and their families, developing mobile apps, connecting with other health organisations and more!
Last Friday I traveled to Melbourne to meet with Anthony (National Executive Officer) and Lauren (Project Manager) from the Australian Bone Marrow Donor Registry. I had been communicating with the ABMDR in the past via email and phone and this was my first face-to-face meeting. I was very excited at the chance to meet with them because I had so many questions I've been wanting to ask and lots of information I wanted to find out for quite some time now!
Ur the Cure was recently reported on in the media, on the Channel 7 news and the Geelong Advertiser newspaper. This has led to meetings with government and other key players to make the changes we need in Australia to better educate people about the bone marrow registry and encourage more people to join
It has been a busy time for me since the conference in Adelaide and I have spent some time contacting health organisations and other relevant individuals about Ur the Cure (my brother says I put the "Pam" in "Spam")! This networking is hopefully planting the seed to spread the Ur the Cure message through these organisations and their networks and it has so far been received positively.
Well I received good news a little while ago that the abstract I submitted to present at the 2015 Survivorship Conference in Adelaide was accepted! I attended the conference last week and it was a great experience. I was accepted for a poster presentation which described the work of Ur the Cure and I had some brochures made up to hand out to people (see the Facebook page for photos of the poster and of the beautiful city of Adelaide)!
Well I'm a bit delayed with this post but it has been a busy time of the year! The Middle Eastern recruitment session was successfully held on the 18th November (which I will most likely call these “cure sessions” in the future after some feedback – I just named it after what the ABMDR call it and it probably sounds a little too serious for what it is)! It really was a great night and you can see photos of it on the Facebook page by clicking here.
I've spent the last couple of months preparing for the upcoming recruitment session. I've locked in the venue, created posters and other materials, established an appointment system and more. It was great to be given the opportunity to talk at the 2 parishes who are involved - Our Lady of Lebanon Maronite church and St George's Orthodox church in Thornbury, Melbourne. Everyone at both parishes have been very supportive and are pushing the message.
I have recently had a health professional (a transplant coordinator) to verify all the information on the Ur the Cure website. It was great to receive the feedback and doing so makes me feel confident in promoting it further.
I was reading the Australian Bone Marrow Donor Registry annual report recently (just enjoying some light reading! Actually I just like to keep up to date with everything that's happening there). I came across these "recruitment sessions" that they run. I contacted the relevant people and they were very helpful. And so now Ur the Cure is in the middle of organising its first "recruitment session".
2014 has seen me regain much of my health and fitness, spending time with family and friends (and Percy my pug), weekends away and going to Port Douglas for a nice holiday! And work wise I've been involved with the hospital committee, working with the Leukaemia Foundation's Light the Night event committee plus I have also started a business with my brother Matt.
As for Ur the Cure, well it was during this time that a thought randomly popped into my head while I was praying/meditating late one night (call it what you want)! For a while I had been trying to come up with some way to pull my ideas together - a name, a concept, anything! And all of a sudden, I was telling myself that same message that we always hear
I could talk lots about this new term that is starting to emerge in the cancer arena, I will try and keep it as short as possible but survivorship is something else that I am also passionate about. And I hope this post can help other people going through the same thing by relating to it. Returning back to "normal" life and finding an immediate happiness when treatment stops is difficult
During my recovery after my cord blood transplant (end of 2012 to now), I decided that I wanted to try and improve ethnic diversity on stem cell registries. I felt that there was a reason as to why I went through what I went through, particularly since my experience wasn't "normal" with all the crazy happenings of the extensive media coverage and meeting the President of Lebanon.