Ironava

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The primary goal of this campaign is to raise awareness and fundraise for Rett Syndrome research. Ava, my daughter, is a beautiful 12 year old girl – she is smart, cheeky and gifted, combining a huge smile with shining eyes that are completely alluring and she knows how to use them with anyone that meets her. Sadly, Ava was born with Rett Syndrome. As the effects of this devastating condition do not take hold until about 18 months of age, for the first 12 months of her life Ava’s mother and I were completely oblivious to what was in store for Ava and our family in the years to come.

What is Rett Syndrome?

Taken from the Rett Syndrome Research Trust website:

Imagine the symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorder… all in one little girl.

Rett Syndrome is a serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopaedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

The Event

2020 Ironman Port Macquarie
will be the pinnacle and final event of the campaign. Leading up to this event, we will have the opportunity to raise further awareness through intermediate sporting events along the way including, the Sunshine Coast 70.3 Ironman, Noosa Triathlon and Mooloolaba Triathlon.  And other functions that will be highlighted through our Facebook page.

Why Ironman?

I have found triathlon has helped me over the past 6 or 7 years - in providing a great social and healthy outlet. I have completed in sprint and Olympic distance triathlons as well as a few Half Ironman distance events but I’ve never completed or even attempted a Full Ironman event… basically it’s bigger than me right now – beyond my current capabilities – loads of training ahead.

Not for one second do I doubt that I will conquer this challenge. I’m lucky – this is just as much a mental sport as physical… and I have Ava, and I see the struggles she goes through every day. It puts the pain and doubts during training for a race into perspective and I can drive forward. I also know that Ava is stronger, tougher and more resilient than I will ever be no matter what race I finish – She Is The True Ironman in our family – IRONAVA.

The Fundraising

We have a goal to raise $10,000 for Rett Syndrome research (I plan to set new goals as we smash our way through each milestone). Every dollar raised will be donated to Rett Syndrome Research Trust. This is a US based organization who are leading the way in the arena of Rett Syndrome research. Some may ask, “why not donate to an Australian based charity?” - the answer is simple, RSRT are unapologetically devoted to one goal only – FIND A CURE. And this is what we hope for more than any other outcome. It’s a real hope, with real belief in the science community that a cure is achievable. RSRT is headed up by Monica Coenraads. Monica is a parent of a beautiful daughter with Rett Syndrome. I urge you to learn more about Rett Syndrome, the RSRT team experts, and most exciting of all, learn about their current paths on a way to a cure.


What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive research to a cure for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

In 2017 RSRT launched a three-year, $33 million strategic plan called Roadmap to a Cure. The plan prioritizes four scientific approaches that attack the disorder at its genetic core and offer the possibility of a profound reversal. Roadmap to a Cure is the only comprehensive plan ever developed by any organization anywhere to advance a cure for Rett Syndrome.

By funding the most Rett research worldwide, $58 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (3)

  1. Suzanne Bishop 
    2 weeks ago
    $100
  2. Michelle Worthington  
    2 weeks ago
    $30
  3. Megan Morey (Kirby) 
    2 weeks ago
    $30

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