I celebrated my 41st birthday this week and I had lots of lovely text messages, emails and Facebook posts wishing me well on my day. It was a stark contrast to last year’s fundraising extravaganza and the day passed doing my favourite things, spending time with my family, eating lunch at my local cafe, cupcakes made by my nephews and enjoying a generally laid back kinda day.

So a year later what is the impact of Paying40Forward?

The injection of the fundraising we achieved from the Paying40Forward campaign, along with fundraising by other families just like us, the Australasian Shunt Registry is certainly moving in the right direction. It has now been almost a year since the Neurosurgical Society of Australasia invited the relevant hospitals around the country to participate in the registry. 50% of the eligible hospitals are now participating in the registry, with 19 of those fully approved and collecting data with over 100 records now in the database.

The shunt registry also has its own website (www.shuntregistry.com.au) where you can find out all about it as well as see which sites are participating – these include hospitals from all over Australia and a couple in New Zealand as well – a very stark contrast from a year ago when only 1  Sydney hospital was entering the ethics process and there was little information available about the shunt registry unless you were “in the know”.

So I would say, we as group, came together and had a great fun party and can honestly say we have had a significant impact on the Australasian Shunt Registry.

Of course the work continues and our friends at the Hydrocephalus Support Association continue the fundraising and awareness work tirelessly to keep this issue in the front of minds of our MPs, the medical institutions and the general public. The HSA held their annual conference in April, we were lucky enough to attend and meet Dr Brian Owler, the neurosurgeon who has been a driving force behind the shunt registry, he thanked us for our support and gave us a great perspective from a surgeon’s point of view about why the registry is important to them and making them better at their job.

The Gandhi quote pictured above was given to me on a birthday card for my 40th and it still sits on my fridge a year later. It is true, we as individuals can “be the change” for the better by putting ourselves out there. I will admit sometimes it is not easy, but hell yes! its worth it.

So if you are looking for a cause, got a spare $2 or generally feel like paying it forward yourself – my answer is … be the change and do it – it does make a difference and you can be a part of making  someone else’s life better.

Donate to the Hydrocephalus Support Association here – and keep the great work going!

It’s been a month of getting on with all of the other things in our lives, trust me I still smile everyday about the result we achieved for the Australasian Shunt Registry. It was really heart-warming to receive a letter yesterday, from Dr Mark Dexter at the Neurosurgical Society of Australasia, to thank everyone who contributed to Paying40Forward. I have scanned the letter and posted it below. Our contribution is helping more and more hospitals get on board for the collection of data which means the shunt registry will help more people, this is great news!

Read here…

We also directed the remaining $1073 of our total fund-raising to the Hydrocephalus Support Association who look after patients and families. We are very lucky to have this organisation in our lives as it actively helps those new to the condition or those that are having incredibly hard time. So pleased to help them keep up the great work!

So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable.
– Christopher Reeve (aka Superman)

This quote was sent to me by someone who knows the Shunt Registry project well, I thought it was very fitting that this is their “MANTRA”.  Before the registry was even built there were advocates before me who fought to get it established and there is still more work to be done to reach the $200,000 goal and maintain this important project moving forward.

So far Paying40Forward has donated $15,000 to the Australian Shunt Registry Project. 

But to all of you who have contributed to the Paying40Forward campaign, know that you have helped others, you have made a difference and you will make someone else’s life a little easier.

I’m so proud that a small network of people can come together and made this event so successful. I am truly grateful to all those small and large, local and multinational businesses that put their hands up to help Paying40Forward with no expectation of returns.

Here is a video from the Paying40Forward event which i think really captures the essence of what a great night we had paying it forward and raising awareness for the Australian Shunt Registry and also Hydrocephalus, shot and edited by Jake Blackburn – thanks mate!

Paying40Forward – The Event from Heidi Tobin on Vimeo.

I have also uploaded a photo gallery of images from the event, if you have any from the night please send them to me on email so we can add to the website!

 We will keep you updated on the progress of the Shunt Registry Project and Paying40Forward so stay tuned.

Oh What a Night!

When the ideas were marinating for the Paying40Forward campaign, I had no specific dollar target to reach, as I have always said that even $1 will make a difference, it was about educating my tribe of family and friends or others who may just stumble across this blog about Hydrocephalus and the need for an Australian Shunt Registry – waking up to 40 – this birthday was the best one yet!

Surrounded by family and friends, an idea grown over time, fertilized by THE HELP of over 60 companies and individuals Paying40Forward for me was an incredibly surreal success. Exhaustion and exhilaration have been key describing words for me today, although there are so many more words than that, which I am still yet to discover.

We will have a few more updates over the next few days, our fundraising total, which currently stands this evening at $14070.

Online donations are still open for a few more days, email me for bank transfer details if you prefer that method and keep your eyes peeled for more updates as they come in.

The only two words, which are suitable today… THANK YOU!

If you know me well, you know I love my music, movies and books. I’m a lover of all media and alot of my inspiration for writing this blog comes from words i hear, watch or read. I love Disney’s latest live action release of Cinderella. At the beginning of the film when Ella’s mother is on her deathbed she utters to her daughter “a great secret that will see you through all the trials life has to offer. Have Courage and Be Kind”. This rings true for me and I use this sentence a lot, when dealing with the social situations that face 5 year olds and sometimes even nearly 40 year olds. There is a lovely lesson in Having Courage and Being Kind, no matter what is thrown your way be courageous and be kind.

I’m learning that more and more, it is not what I am or what I have, but who i am and what i do. My experience is that acts of kindness bring us the real joys of life. The joy felt when your kindness makes another person smile is probably my favourite. I have received many kindnesses in the preparation of the fund-raising 40th event and I’m very grateful. (check out THE HELP). And I am so looking forward to the smile on my face when i wake up 40 on Sunday!

Yesterday I was running around picking up the final elements for the event this weekend and out of my extensive play list on Apple Music came on Audra Mae’s Forever Young ( Originally written by none other than Mr Bob Dylan himself). If you watched the Sons of Anarchy TV series from HBO you would know this song. (Here is the YouTube link if you are interested https://youtu.be/rAD-4XKBcmA). In the quietness of cruising in the car, this one song, hit home. While this week is the last of my thirties, and organising a fund-raising birthday has kept me busier than ever, this moment of solitude, uncovered the words that inspire me. Here are Mr Dylan’s lyrics:

May God bless and keep you always,
May your wishes all come true,
May you always do for others
And let others do for you.
May you build a ladder to the stars
And climb on every rung,
And may you stay forever young,
May you stay forever young.

May you grow up to be righteous,
May you grow up to be true,
May you always know the truth
And see the lights surrounding you.
May you always be courageous,
Stand upright and be strong,
May you stay forever young,
May you stay forever young.

May your hands always be busy,
May your feet always be swift,
May you have a strong foundation
When the winds of changes shift.
May your heart always be joyful,
May your song always be sung,
May you stay forever young,
May you stay forever young.

While each one of the lyrics means so much for me. I have also learned that having the support of family and friends, no matter what you face in life, no matter how big or small, this strong foundation helps you sail through the challenges. Yes I have also started a DIY project in the courtyard to build a ladder to the stars, this 40th birthday project of paying it forward certainly is some wishes coming true. I wished that more people would know and understand Hydrocephalus. That the event this weekend will provide some much-needed funds for the Australian Shunt Registry. And that by Paying 40 Forward it will make a difference to all the families that have a-lot harder time than us dealing with this condition.

So for once in my event planning life, I am not stressed, I am not concerned about the outcomes. I head into the weekend of celebrating the last days of being in my 30s determined to pay it forward so turning 40 will be a joyful reflection in the years to come. As I will know that I had the courage to make a difference, through kindness you can achieve almost anything and that I will be forever young!

While we all know Lennon-McCartney are the original scribes of the song, the 1968 cover by Joe Cocker at Woodstock (click the link for the you tube video) is my all-time favourite version. I think I first became familiar with it as a youngster watching The Wonder Years. So yes the track is the music currently playing in my head at the moment, Don’t worry I won’t be chanting out loud anytime soon as I can pretty much guarantee it will be out of tune and you may possibly get up and walk out on me!

I recently attended the Fight on the Beaches Christmas in July charity ball which raises an amazing amount of money on the Northern Beaches for Cancer Research. I was inspired and in awe of the women that work so tirelessly for this cause. I am still trying to work out when they managed to have any sleep over the last 12 months, it was extraordinary effort they put together for the night. Which reminds me, deadline day is drawing closer and the organisation of the event is something I deal with in my head at least daily. I am extremely lucky to have friends that feel as passionately as I do about helping and have sourced from their own network some great options for the silent auction and event.

We are still accepting items for this so if you know a business or product that would be happy to donate send them a link to the website and shoot me an email and I will happily smother them with gratitude, and work out the details.

So if you are not aware of what is on offer for the silent auction we have a list of companies that are supporting us on THE HELP page of this website.  Please check it out and please support them when you can, without their generosity this would not be possible.

So the last time I posted I was off to see my local State member for Parliament, The Hon. Brad Hazzard MP. It was a quick meet up and I got some strategies from him on how best to approach state government on the issue of the Australian Shunt Registry for funding. While we believe it should be funded by the Commonwealth sometimes you just need to get things done. I will be taking his advice and working with the Hydrocephalus Support Association on this in the coming weeks.

The Hydrocephalus Support Association has also become a larger part of my life with me directing some my love job hours in helping to design a new format for their quarterly newsletter. The articles are coming together and we have a fresh new look for all the members coming out really soon. I am also lucky to have the support of Robyn Campey the vice president of the association attending our event in August.

The Neurosurgical Society of Australasia, the beneficiary of our event, has also been working hard on the Shunt registry project with new ethics administration approved at the Sydney Childrens’ Hospital Network, this is a giant leap towards the commencement of data collection from patients. They have also recently received fundraising efforts from families just like ours and this has enabled them to appoint a project manager for the shunt registry.

It is so encouraging when we take up a fight for awareness and our message about the Australian Shunt Registry starts to infiltrate those that need to hear about it. As I mentioned last week I wrote to all my local candidates in the federal election. I received a heartfelt response from our Labour Candidate, Mrs Rhonda Funnell, she will be forwarding a copy of my letter to the Shadow Minister for Health, The Hon. Catherine King. They are currently developing their health policies moving into the election and so it is very timely that our message is being heard now.

I have also had a meeting request from the Liberal Candidate Mr Jason Falinski. I hope this will happen shortly. So madly preparing myself to best represent the needs of the Australian Shunt Registry so we can continue to raise awareness with the people who will potentially be representing us in Canberra. I will definitely keep you posted on the outcomes of the meet-up.

In really awesome news….

The Hydrocephalus Support Association announced over the weekend that due to some awesome fundraising by the association they have made a $5000 donation to the Neurosurgical Society of Australasia to help fund the $60,000 a year cost of the Australian Shunt Registry.

The NSA has advised that a manager of the shunt registry has been appointed and is assisting with the ethics approval process with the Sydney Children’s Hospital Network before data collection commences at Sydney Children’s Hospital and The Children’s Hospital at Westmead.

We are very lucky to have the HSA working so hard to help all Aussies dealing with Hydrocephalus.

Event planning is underway… 

The fundraising event planned for August is slowly coming together with a number of local suppliers coming on board to assist with the night and The Sydney Swans have already sent us a signed jersey to hopefully help in our efforts. So let me know if you want to get involved in supplying the event – we are always happy for the help!