The Adventures Of Hydro Girl & Me!
Helloooo Brain Drainers!! Well what an exciting time it has been for The Brain Drain Project over the last couple of weeks!
First of all it is with great excitement that I can tell you that our first batch of Hydro Girl comics sold out within the first week of being released!! The response to the comic has been astounding and I am just so grateful for all of the love and support that we have gotten from my fellow hydro suffers and also the people that support our cause!! It’s just a great warm and fuzzy feeling!! For those that didn’t get to buy a copy of the comic from the first batch, never fear, a second batch has been ordered and signed copies are still available from the website! There has however been a price change as we weren’t covering cost of printing. The comic is now $15 plus $5 shipping from the website. The shipping is the same worldwide. I have tried to make everything as affordable as possible whilst still raising money for the hydro associations that I work with.
My brother and I showing off our shiny new Hydro Girl comics!
Next up, last week I attended a hydrocephalus conference in Sydney! It was run by the Hydrocephalus Support Association Australia and sponsored by Codman who manufacture shunts.
Now before I go in to the details of the conference, I just have to say the most enormous thank you to my sister Jess. I live in South Australia, Sydney is a massive 15 hour drive for us and Jess drove me all the way there so that I could attend this conference! That is a total of 30 hours driving!! That’s not including driving around the city. So I just want to say a huge thank you, I would never have gotten to the conference without you and I appreciate it so much! Love you sis!
My sis and I! She was lovely and insane enough to drive me the 15 hours it took each way to get me to the conference!
Ok, so this was the first time in my life that I found myself surrounded by people that have hydrocephalus. Prior to the conference I had only ever met another 3 people with the condition. This experience just in itself made my trip memorable and well worthwhile. I cannot express all the mixed emotions felt in the short period of time I spent with all of these amazing people and I am honestly so blessed to have met so many new friends!!
This pic was taken on day 2 of the conference! Unfortunately some people had to go home after the first day so this is just part of the group of amazing people I met!
The conference itself proved to be very successful and provided all the attendees with some very useful information. From statistics on how much hydrocephalus costs to treat to taking an in depth look at the shunts themselves and finding out exactly how they work. We talked about how to prepare our children with hydrocephalus for hospital and what we can do to make them feel comfortable and take a bit of that fear away because as we all know, having brain surgery is a very daunting experience!! Personally I think it actually gets scarier the older we get because we understand more of what is happening. We talked about Normal Pressure Hydrocephalus, Epilepsy and Seizures and how to build a Trust for someone with a disability. Anyone that reads this blog and went to the conference, I apologize if anything I mention is incorrect as I am going by memory. Lol.
My favorite session from the conference information wise was the Epilepsy and Seizure presentation. As you guys know I have had seizures in the past but epilepsy and seizures have never been explained to me. What they are and why they happen, so it was really great for me to finally be able to get some understanding on the topic.
My MOST favorite part of the conference however, was the group sessions that were held where we got together and got to talk about our experiences with hydrocephalus. I loved listening to other people’s stories and experiences. Everyone from my group is so amazing and it really has just fuelled that fire in me that wants to help people with hydrocephalus and their families. I just can’t stress enough how awesome and strong this group of people are. They inspire me. So much love for you guys!!
Another important note from the conference, we had Associate Professor Dr Brian Owler give a presentation on the statistics of hydrocephalus and how much it costs the country each year. Now the idea of this presentation is that we all share the information with parliament in hope that they will give us the money to begin a Hydrocephalus Registry in Australia. It’s a very important step for hydrocephalus research. If you would like to help, here’s what you need to do. The Hydrocephalus Support Association Australia www.hydrocephalus.org.au has made a sample letter to the Secretary of Health, Catherine King, available for download on their website. I am asking you all to go and download it and email it through to Catherine.King.MP@aph.gov.au
You can also sign the petition!!! Just click the on the link below-
http://www.avaaz.org/en/petition/Implementation_of_a_Shunt_Registry/?cob...
We as a group need to make some noise!! Let’s get this registry going, it is an important step for hydro research!!
Just a few other pics from the conference! The one on the end is me holding a shunt! So cool!
Now I am currently in the process of getting ideas for Project Brain Drain fundraisers for this year. We of course are working on issue 2 of The Adventures Of Hydro Girl and I have a couple of ideas for some other projects that I would really like to do and am so excited for! I will keep everyone up to date as these things progress!
I do believe that is it from me, I hope that all of you Brainiacs out there are keeping well!!
Be sure to make someone smile every day, it is the best gift that you can give someone.
Sending out all my hydro love to you all!
XX Sarah Brain Drain XX
