Have you ever wondered about the team behind the scenes at PSC Support Australia? Who are we, what do we do, and why do we do it?
Well, now’s your chance to find out! After coming together a few times we officially founded and incorporated our organisation in June 2018. With a dream to educate, advocate and support Australians with PSC, along with their families and friends. Our committee largely still exists of it’s founding members, with a couple of small changes. Some have had to leave us due to health or other commitments, some have joined us, and one has simply changed roles.
I guess I will begin with myself – having been an active member of the PSC Partners Seeking a Cure Organisation for many years, time came when I knew Australia needed its own voice. With the encouragement and support of PSC Partners, and PSC Support UK, I reached out to our community and have been encouraged and energised to be working with such a committed group of people. I do work 4 days a week – and, like all our team, my time to PSC is voluntary, and a labour of love. When Bek, my daughter, was diagnosed 21 years ago at the age of 11 months there was little information and even less support. What a world of difference and opportunity we have now. I guess you could say I have 3 main coping strategies for this roller coaster ride that is PSC . The first being my faith, the second being a drive to learn, be educated and understand as many aspects as I am able, and the third, to help others through the journey.
Next on board was the wonderful Alex and Barry. Alex herself has PSC but is blessed with having not too many medical impacts at this stage. Barry, her husband, is her proud supporter – and also who I call my “nuts and bolts” guy. He keeps us on track and from a business perspective, and always gently reminds us when we need to bring practical to the dreams. Alex works hard screening and adding all our new Facebook members – and keeping a loving watching eye over the group. I was very grateful for her willingness to learn the technology needed to take this on, and the incredible time commitments this involves. The pair can be hard to pin down as they do love their travelling – but I confess, I am very jealous of all their adventures (of course Covid has seen them staying put more, but I think they’re already planning more trips).
Our artists/designers and tech pair are the very gorgeous Travis and Ann-Marie. Parents of a young family, and also both working, they somehow find time for creativity and practicality. Between them they designed our amazing logo, our website and our printed brochures. Travis has a PSC diagnosis, and while doing quite well currently, has seen more than his fair share of PSC complications and the insides of hospital walls. They never let that stop them living big, and showing their kids how to love others, and how to have fun.
Georgie is another founding member, who recently had to take a step back while she went through the transplant journey. We are so excited that her recovery is well underway and she is able to bring her joy back to our work. As the mum of young kids and readying to re-enter the workforce with a happy and healthy liver, we love all that she brings to our team. She played a major role in bringing together the information for the website, and provides a voice of care and reason within our Facebook community. Georgie is also our only committee Perth based member and is doing some great worth there, along with other helpers, of bringing together community.
The final founding member to mention is Bek, who just happens to be my daughter. At 22 she’s certainly seen the whirlwind of nearly every possible PSC complication that exists. She’s coming up now for 9 years since her transplant. She recently stepped away from our committee as she is also very actively involved in a peer support group for teens and young adults with chronic illness and her time was simply to torn between the two. She is remaining with us as our ambassador, and always happy to share her story and get alongside other young people facing what may appear to be an insurmountable journey. When she’s not volunteering with these patient groups, she is volunteering at a local playgroup or in various capacities in musical theatre.
Newcomers to our group include Samantha. With her own PSC diagnosis, she is battling a few health issues currently, and juggling family and work. Yet she’s still managed to bring a new energy to our team and is keen to find ways to support the projects we’re working on. I’m pretty sure when her health allows, she will soon be Margie’s right-hand man!
And last, but definitely not least, Margie has also recently joined us and has quickly become our fundraising dynamo! She brings experience from other not for profit health groups and is cooking up a storm – so stay tuned for all the events she has in store for us. Margie is Travis’s mum, and thus, like each member of our team, has a personal connection to PSC.
We meet roughly every month via Zoom to talk about what we want to achieve, and what we need to do to achieve it. Our dreams are big, but our resources not so much. We started with a quote from a musical (I do so love my Broadway wisdoms!): ’A million dreams for the world we want to make.’ We believe If we keep dreaming, there will be a world where there is always someone by your side, a world where you hear you have PSC, but there’s treatment options, a world where PSC is curable. If we dream big enough, work hard enough, dream enough dreams, then that world will become a reality.