Hey all !

This September, Fleur, Matt and I will all be running in the Blackmores Sydney Running Festival, taking the 21km (or 42km in Fleur's case) scenic route from the Harbour Bridge to the Opera House. This is a fairly long trek and we're not just doing it for our own amusement BUT as a way of raising money for the Muscular Dystrophy Association.

So what you say? For those of you who aren't aware, Muscular Dystrophy is a neuromuscular disorder that has a detrimental effect on an individual's muscle strength and functioning. So many with this disorder are born extremely physically weak and will require a wheelchair before the end of primary school. They often end up with severe respiratory difficulties and getting through each day requires a phenomenal effort.

So what still? Well, Fleur and Alana's ittle brother Blair has a neuromuscular disease so we see first hand how everyday living for him is a challenge in itself. Many of the things that we take for granted he will never be able to experience like runnning, jumping, riding, driving, just kicking a ball or swimming at the beach. And so often we're reminded of the luxuries of our thriving, functional muscles, the opprtunities they open up for us and we think, why waste that? SO we're hitting the streets to run the half marathon (with Fleur, the seasoned runner, doing the full marathon) for those who would if they could but just haven't been given that opportunity.

So what should you do? Open your eyes, open your hearts, then open your wallets and give kindly. Our aim is to raise awareness of Muscular Dystrophy but also to raise $5000 to go towards making life just that little bit better for those who haven't been afforded the luxuries we have. This money will go towards research into uncovering the genetic intricacies of this complex disorder as well as providing much need relief for these children and their superhuman carers.

Thanks for checking in, and we hope to see your name on our page :)

Graciously,

Fleur, Matt and Alana 

- This just in:

MOVIE FUNDRAISING NIGHT: TAKING WOODSTOCK

Wednesday 2nd September
7:30 pm
Hayden Orpheum - 380 Military Rd Cremorne
Tickets $20

Call 0403707151 for tickets OR email alllana@gmail.com

ALSO - Thanks a lot to everyone who has donated so far! The response has been amazing. We've been overwhelmed by the generosity of everyone and are just extremely grateful for all of your support.
Thanks again!
Fleur, Matt & Alana 

FOR THOSE WHO ARE INTERESTED
A LITTLE BIT ABOUT BLAIR.....
 
Since the beginning Blair was always involved in a different situation then encountered with Mum and Dad's five other children. With his constant need for care, doctors, health care practitioners, and all those involved, were baffled by the cause of his muscle weakness. With the unknown cause of his muscle weakness, understanding what Blair might be able to achieve or problems he may come across was a constant issue when trying to care for him.
 
At every step of the way however, he has always done his best, achieving what many thought was impossible. We were always told that due to his severe weakness Blair would probably never walk. He did walk though....and that was just the start!
 
In no particular order Blair has done these things by himself and sometimes a bit of help...
 
he jumped off our diving board,
Fell of our verandah..(just one of many falls that he has suffered!)
Got thrown in our grandma's pool (from about a rock about 1.5m high!),
Regularly jumped on the trampoline with me,
Spent a total of probably >2years in hospital (much of that time in the intensive care unit) and still kept up at school
Went 170km/hr in a Lamborghini
Competed in a 100m wheelchair race...which he trained for on our street (“alot rougher than rubber turf”)....came last by a good 60m but still pushed all the way to the line and finished!!
Played cricket and indoor soccer in our lounge room with modified rules
Ate 14 courses at Tetsuya’s
Is an expert driver in his electric wheelchair and can pretty much drive full speed (~11.2km/h) around anything
Drove into a pole (apparently the sun was in his eyes)

 
The list could go on...and Im sure we will keep thinking up things that I should have told you guys.....but we love Blair so so much would love to help other people like him. Giving them the care they need they are able to enjoy the little things in life we often take for granted.
 
MORE RECENTLY.....
Last year  the genetic cause of his neuromusclar disease was found.  A mutation in the Dynamin 2 gene. Even though this information is now known there is still alot of work to be done, alot of time and money and many many years before someone similar to Blair may have the option of a treatment or cure for muscle weakness. Giving money now to associations like MDA will not only help provide respite care and essential equipment for sufferers now but will also give money to research institutions that are actively working towards a cure.
 
 
This is our page for raising money for MD in running the marathon. Have a look. Maybe send it to friends, colleagues, anyone who maybe interested.  

Words will never describe the difference people like you can make to a good cause!!