hydrocephalus

do something day

Today is Do Something Day, it is also MRI day for us.

There is a celebration today of volunteering and random acts of kindness being promoted by the Daily Telegraph. Do Something Day is initiative to remind people, a couple of minutes is all it takes to make a difference in someone else’s life. This is the same theory behind paying my 40th birthday forward and raising awareness of hydrocephalus to my family, friends and people who share this post. So if you don’t have the time or opportunity to help an old person across the street then simply just share our message about Hydrocephalus.

While I am an avid volunteer, today I will be spending my do something day focussed on Miss K. We have our regular MRI checkup that the Cerebral Spinal Fluid in her brain is flowing sufficiently and the ETV performed by our neurosurgeon, just over two years ago is still open and working correctly. Miss K will go under general anesthetic tomorrow for between 1 to 2 hours, we have been preparing ourselves and Miss K for this since it was requested in March.

So as far as our five-year old is concerned a MRI consists of funky hospital gowns, colourful playroom and a little sleep while they take photographs of her brain. And yes a bag full of treats for being nil-by-mouth since midnight last night (skipping breakfast is strange when your five!).

So don’t think for a minute that this is a negative day for us – we always approach treatments appointments and anything related to Hydrocephalus as only a positive experience for Miss K. We never show her that we are worried ( we may get a bit antsy the day before, but we keep it to ourselves) it’s just another day as we are the lucky ones. It is our job to keep reminding you of other families who spend weeks (not just a day) in hospital with their children who have the same condition as Miss K – this is important and if you have nothing to do today then #GiveYourBest for Hydrocephalus.

Do it Share or Comment on this post, Donate to either Paying40Forward Donate Page or you can also directly donate to the Hydrocephalus Support Association who help families just like ours.

 

helphydrocephalus

Wake up your keyboard warrior skills and help Hydrocephalus

It takes resilience to keep going forward when the road ahead is steep, undulating or unknown. I attended a family funeral last week for a kind and wise elder of our extended family and in hearing the eulogy of this lovely lady’s life it stuck with me that it was her resilience that got her through. She didn’t always have the easy path to travel, she quite amazingly survived a life-threatening health condition and through persistence she continued on. I came away from the funeral inspired to keep up my task of making a difference for people suffering with hydrocephalus.

Its been a few weeks, since I last posted, I have been waiting for announcements on who will be the candidates in our local area for the federal election as I have been constructing letters from myself and also templates that you will be able to download and send yourself. If you do want to join me in writing, please feel free to use the templates to write to your local federal and state members for parliament. Make sure you update the template to be a reflection of your own details and/or opinions on hydrocephalus. If/when you receive a response please let me know as it is a great achievement to have our message shared by as many supporters as possible. Most candidates have emails in place so you don’t have to “post a letter” anymore just shoot them an email. All details to do this will be at the end of this post.

How is advocating to the government about hydrocephalus and the shunt registry helping Miss K?

Well the more people who say “hey you should know about this and be doing something to help” to our government representatives, will raise the volume of our voice and open the ears of our government to see the need of the thousands of Aussies currently dealing with Hydrocephalus. Currently it feels like our government doesn’t believe hydrocephalus to be a problem. Apart from the initial seed funding in 2014 for the registry no additional funds have been committed to research into this condition. So in the event that Miss K needs more assistance with her condition in the future then the best option will be available to make her quality of life better or even save her life.

In the recent newsletter from the Hydrocephalus Support Association they included an excerpt from the newsletter of the American Hydrocephalus Association .

In December, Congress passed a bill to fund government agencies throughout 2016, and in doing so, took huge steps to support the hydrocephalus community. The National Institutes of Health (NIH), which is responsible for conducting life-saving research into conditions like hydrocephalus, saw a $2 billion increase in funding, bringing their total to $32 billion. That’s the largest funding increase the agency has seen in 12 years! As a result, NIH now has the resources it needs to better support scientists working on life-changing hydrocephalus research. Thanks to the hard work of advocates in the hydrocephalus community, Congress is clearly hearing what we have to say and paying attention.

We criticise the Americans for their health care but you have to give it to them when they spend money on research. Over the last few years they have been listening to the American Hydrocephalus Community and their advocacy for more funding. We don’t need $32 billion dollars but we do need the Australian Government to take the condition seriously and fund health research projects that will directly save Australians lives and save the Federal and State health systems money.

Download the Letter Templates for writing to your local candidates. 

Writing to the current Local Federal Member for Parliament in your electorate. 
Writing to a local candidate in the federal election who is campaigning for the federal seat
Writing to your local state member for parliament

TO find out who is your local member and candidates this website has them all listed by electorate with links to their website where you can usually find their email address.

If your a local, living in the northern beaches the emails for the federals seats of Mackellar and Warringah are linked below as well as all the local State Members of Parliament.

Federal Contacts for Mackellar

The Hon. Bronwyn Bishop MP
Bronwyn.Bishop.MP@aph.gov.au

Liberal Candidate – Jason Falinski
mackellar@nswliberal.org.au

Greens Candidate – Mike Hall
mike@mikehall.net.au

ALP Candidate – Rhonda Funnell
Rhonda.Funnell@nswlabor.org.au

 

Federal Contacts for Warringah

The Hon. Tony Abbott MP
http://tonyabbott.com.au/contact/

Greens Candidate – Clara Williams Roldan
https://www.facebook.com/Clara4Warringah/timeline

ALP Candidate – Andrew Woodward
inbox@warringahlabor.com

NXT Candidate – Marie Rowland
marie.rowland@nxt.org.au

 

State Government Contacts

The Hon. Brad Hazzard MP
Member for Wakehurst
wakehurst@parliament.nsw.gov.au

The Hon. Rob Stokes MP
Member for Pittwater
pittwater@parliament.nsw.gov.au

The Hon. Jonathan O’Dea
Member for Davidson
davidson@parliament.nsw.gov.au

The Hon. Mike Baird MP
Member for Manly and Premier of NSW
manly@parliament.nsw.gov.au

 

 

 

When advocacy for Hydrocephalus is hit with that lucky time of an election

I was more than buoyant to hear the casual announcement of the intended Federal Election in Australia on July 2, by our current Prime Minister Mr Malcolm Turnbull MP. Here is an article the Manly Daily posted this week, which gives you a round up of our local delegates. CLICK HERE FOR ARTICLE.

It can be a great time to be advocating for a cause or issue that means something to you. In my local seat of Mackellar, the Hon. Bronwyn Bishop MP was ousted at pre-selection as the Liberal Party candidate, so this just leads to opportunity to canvas the current local political candidates from all sides, to raise my Paying40Forward campaign for Hydrocephalus and the Australian Shunt Registry, and why the government should be implementing ongoing funding for this important health issue.

So with the guidance of the Hydrocephalus Support Association, I am off letter writing this weekend to all the candidates for the local seat of Mackellar with my story, if you wish to write to them or your own electorate candidates about the Australian Shunt registry, i will publish examples of my own letter which you can use as basis to send your own.

Why is it important for us to write to our local members? Well in recent correspondence with Rikki Lambert, a candidate for the Senate in South Australia and also a parent whose child passed away from hydrocephalus, he helped me highlight the main reasons we need to write to the members locally; it is about gaining awareness of the cost savings that this project could bring the health system in Australia and have our local members advocate the health minister on our behalf.

So I am going off to tap the keyboard for a few more hours and construct something that Brad and Bronny or her successor, may sit up and take notice! I’ll keep you posted!