Today is September 1st and that means one thing – the start of CMT Awareness Month. During the month of September I will be using my blog to play a part in raising Awareness with an “alphabet challenge” blogging a letter / key work almost every day in the month of September. Today is the letter A = achievement, alcohol free beer, awareness and audacity. I hope my month of blogging will help you to learn more about CMT – the most common but least well known hereditary nerve disorder. And I hope this will also help to raise funds for the Charcot Marie Tooth Association to support its efforts to find a treatment for CMT. You can join me in learning more about CMT by clicking onto www.cmtausa.org and of course a donation would be wonderful too!
My 2014 Triathlon Season: A Season of Achievement
On Friday, all things triathlon for me came to a halt. After a few emails exchanged with USA Paratriathlon, some soul searching, and a conversation with my coach, I decided to withdraw my name from the ITU Elite Paratriathlon start lists for the remainder of 2014. And then I received a text message cancelling the Great London Swim. A sign – the time to start the off season had arrived.
It has been a fabulous year in triathlon for me – one that I started with no objectives other than racing with a smile, meeting up with a lot of friends at races, and having a lot of fun. With an open mind and heart, this year turned into a breakthrough year for me, particularly on the mental side of things. No longer am I preoccupied and drained from managing the issues with my knee, or the issues that crop up due to my CMT and EDS. This year, after a struggle to get going again, I finally just got on with doing what I do and focused on the fun – the real reason WHY I have continued year after year with triathlon. By focusing on the FUN, I had breakthrough moments. I consistently crossed the line in less than 2 hours in the sprint distance. I achieved podium positions in a few races. I met some amazing people. And I was overwhelmed by kindness and support. My knee held up.
My plans to stop racing triathlon at the end of 2014 seem to have taken a slight detour. I find myself looking forward to the future – specifically MY future in triathlon – with hope and optimism.
I think this image about sums it up – it was taken just at the finish line of the London Triathlon on August 2nd – my 8th time crossing the line at London, the triathlon that I consider my hometown tri. I was overjoyed. I raced for fun, with no time goals. My hope was to finish with no knee problems. And I managed it all. Smiling, hot, sweaty and with a drink in both hands. A perfect day!
I discovered at the London Triathlon Erdinger alcohol-free beer. Way back when I did my first London Triathlon it was sponsored by Michelob Ultra. This year the London Triathlon had sponsorship from Erdinger, who provided the finish line beer not only at London but most major races in the European triathlon calendar, like this shot of Mirinda Carfrae at the finish of Challenge Roth 2014.
Source: Triathlete Europe
I can confirm that Erdinger post race is super tasty.
September = CMT Awareness
This month is CMT Awareness Month. CMT – or Charcot Marie Tooth disease (so named for the trio of doctors who identified this grouping of neurological disorders) impacts 1 in 2500 people, including me.
Many people have heard about diseases through awareness building activities – like the ALS ice bucket challenge. However, awareness on its own means nothing, if it is not backed up with a big hairy audacious goal and a strategy to achieve the goal.
For me, and the charity that I support the Charcot Marie Tooth Association, the big hairy audacious goal is to find a treatment for CMT. And that treatment will not come cheaply – especially as CMT is considered an orphan disease (impacting less than 1 in 1500 of the general population) which means that it does not attract much in terms of private research because the population impacted is so small that the revenue stream from selling treatment doesn’t get private companies too excited.
So our first step is awareness – doing what we can to get the word out about this condition that is called CMT. And the awareness is part of a process that helps to meet the big hairy audacious goal of finding treatment – which costs money.
So how I am helping with awareness AND the audacious goal?
I am hosting the Got Nerve event for CMT Awareness Month. Over the course of September you dedicate a mile or more – in any type of activity – to those with CMT.
You can register for Got Nerve on Eventbrite. Details can be found there on how to participate – including how to be eligible for prizes donated by Punk Rock Racing and 2XU.
Audacious Goals
On the back of the ALS Ice Bucket Challenge a lot of people have been talking about whether these types of challenges make a difference, if fundraising is “going to the right place” – and the dialogue is great. It gives us all a chance to stop and think about charity giving.
As I tell pretty much anyone who is willing to listen, when it comes to charity donations I am a firm believer in treating donation as an investment in a charity. I encourage people to look into the background of the charities they give to, talk to the people who run them, learn more about the hairy audacious goals the charity has – and its strategy for getting there.
That’s what I did when I chose to support the CMTA. And here is a link to the process I went through.
And why audacious goals? I am a big believer in dreaming big – aiming high – and then making a plan to get there. And when it comes to a progressive degenerative nerve disorder, the aim has to be big – to find a treatment and to set forth a strategy to get us there.
In response to an article doing the rounds on how the ALS viral ice bucket challenge was not benefitting anyone, someone posted a link to this TED Talk by Dan Pallotta about why the way we think about charity is wrong. I like TED Talks (online not in person – that is a subject for another day) as they quickly allow a person to grasp a concept and ideas, and then to take these away and think about them some more.
Here’s the link to Dan’s talk. You have to think big. Big hairy and audacious. Especially when it comes to changes for parts of society that may otherwise be left behind.
It’s CMT Awareness Month. Today’s post was brought to you by the letter “A” – achievements, alcohol free bear, awareness and audacity. You can learn more about CMT and donate to our audacious goals at www.cmtausa.org. Thank you.