Author: Pamela Bousejean
Lots has been happening with Ur the Cure over the past couple of months!
I secured a meeting with local MP, Federal Member of Corangamite Sarah Henderson. We spoke about Australia's situation regarding the bone marrow registry and some changes that the government could support to help more patients find life saving matches. I wrote up a formal submission which has been forwarded up to the health minister.
There has also been lots of activity in the media lately. And it's good to finally see some media coverage that doesn't simply focus on the short term struggles of patients searching for a match. Although this can be beneficial for people to see real life stories to understand why it's important, in the past there has been nothing to address the wider issue that needs to be resolved...until now! Anthea Cannon from The Geelong Advertiser has been a huge supporter and has taken the time to understand the facts and speak with myself and relevant stakeholders about the importance of bone marrow donation, and how we can work towards making some improvements in Australia in this space.
I have also been in regular contact with Renee who runs the Jake's Quest for a Cure Facebook page. We shared Jake's story through our network as he is struggling to find a stem cell match and Mum Renee is doing all that she can to increase awareness and donor numbers, particularly those who come from a Samoan background. We have been working together and I was able to put Renee in touch with the fabulous journalist Anthea who ran a story about Jake's situation and simultaneously highlight the wider issue that is affecting the lives of many Australian's like Jake every day. I have been in contact with bone marrow registries over in New Zealand as well as the U.S. for support in rallying up more people to join the bone marrow registries overseas (there is a large Samoan population in Hawaii and New Zealand). We have received an amazing response since his story was published with lots of people keen to join the bone marrow registry and helping out in many ways. Renee is organising an event on September 19 (which coincides with the inaugural World Marrow Donor Day) to get more people registered onto the bone marrow registry as well as lots of other fun activities and fundraising.
I have also had several articles published through other organisations who support the cause and are getting on board to spread the message. Know Pathology Know Health Care and the Royal College of Pathologists Australia have both shared information about Ur the Cure and our goals. I even received support from Yaser Martini from the Team Margot Foundation in the UK, he also published a blog entry written by myself through their network. It has been really insightful "e-meeting" Yaser who has had a personal experience when his daughter Margot passed away from a blood cancer and struggled to find a stem cell match. We have both taken similar paths in life after our own experiences and I had a few interesting Skype chats with him, he has been a great supporter of the Ur the Cure.
As well as this I have also had a Ur the Cure mobile app developed - available to download through the Apple app store! Thanks to Troy from Walters Visual Media who donated his time and services to create the app. It's exciting as I have lots of ideas on how the app can help spread the message and give people all the information they need to know about joining or donating their stem cells in one easy spot.
And finally even more exciting news is that I am in the middle of getting Ur the Cure established as a not-for-profit organisation! Again thanks to another local business supporter - Harwood Andrews who are the law firm helping me set up this structure. Establishing as a not-for-profit will mean that I can grow the resources through funding and donations to further develop the Ur the Cure goals through various strategies and campaigns. Currently my resources have been limited as it has purely been just myself putting in my personal hours and resources towards it. It makes me super excited because I have seen how far I have been able to take it with my limited resources and I imagine (and have planned) all the wonderful things that I will be able to do when I have more resources behind it!
I am heading overseas for a long awaited holiday at the end of this month! It's a special holiday for me as I have been wanting to take this trip ever since I was diagnosed in 2010 and it has been a goal of mine. I am winding things down a little with Ur the Cure but will still be active in social media, my plan will be to really get stuck into further growing Ur the Cure and its aims when I return which hopefully by then it will have a not-for-profit status to help me do this!