Charity Tuesday: Me & The CMTA

Over on Twitter it used to be that charities were the spotlight on Tuesdays. Once upon a time the hashtag #charitytuesday was popular. Well, I am going to throwback to those days, and today shed a little light on the charity that I support, the CMTA (Charcot Marie Tooth Association).


Back in 2009 I decided to shift my focus away from supporting breast cancer charities and to lend my voice to something deeply personal – Charcot Marie Tooth disorder. CMT impacts me and about 1 in 2500 other people – and is probably the most common but least well known neuromuscular disorder.

I went through a thorough process to find the right charity for me. I did LOTS of research. You’d be amazed at what you find (or don’t find) on the internet. You can read more about my process and advice for how to choose a charity HERE.

I decided to throw my voice – and myself – behind supporting the CMTA.


Since 2010 I have grown my involvement with the CMTA. Initially I had just a button for fundraising on my website. And raised money for the CMTA with my endurance sporting events. But one thing led to another.

To quote from “Les dieux voyages toujours incognito” by Laurent Gounelle:

“Utiliser l’energie de la colere pour agir, pour realiser ce que tu n’aurais jamais ose faire. Quelque chose de constructif…”

(translation: “Use the energy that comes from anger to act, to realise something that you would never dare to do. Something constructive…”)

Out of anger at the decision of others, coupled with a few inspiring conversations I had held with the CMTA over the course of 2011, the CMTAthletes idea was born.

Our community is for those with CMT who live an active and healthy life, those who want to learn how to live a more active and healthy life, those that support their family members with CMT in the quest to be active, healthy and happy. To quote the founder of Nike – If you have a body, you are an athlete. And that is what CMTAthletes is about. 

On Facebook the CMTAthlete community now approaches 1000 members. Each and every one of those who contribute to the discussion remind me every day that life is awe-inspiring. The community is a never ending source of motivation for me.


Aligning with the CMTA and working with the fantastic leaders of this small but visionary organisation was probably one of the most positive, life-enhancing choices I have made. I am constantly bowled over by the commitment and dedication of the organisation – not only a commitment to find a treatment for CMT through the research that the CMTA is sole-funding, but a commitment to help those with CMT live a better quality of life through the support groups and networks and learning opportunities that the CMTA provides.
I honestly feel like I have met people – leaders – who embody hope. Who live lives dedicated to creating positive change. I not only aligned with an organisation – I have become a part of and have a new family.

Pictured with Patrick Livney, CEO of the CMTA to my left, and Jeana Sweeney, Director of Community Service for the CMTA on my right

The positive support given to me and so many others with CMT by the CMTA is breathtaking.

After the ITU Chicago Paratriathlon race at the end of June, the CMTA hosted a social gathering to celebrate my success – success in this sense being my personal discovery that exercise is the best way to manage CMT, and success in that we collectively have been able to create a home within the CMTA with the CMTAthletes group to encourage and support people in their journey to becoming active and toward the discovery of their inner athlete.

Dale Lopez, Mike Pepoon, the Pate family, Barbara & Chuck Barrett, and so many others took time out of their lives to join me – and the CMTA – in celebrating what is possible. It was such an emotional, moving, positive evening for me – one I will never forget.


I can’t believe that photo was taken in June – and it is now almost August.  Time is moving fast this year for me, and before you know it September will be here. September is CMT Awareness Month. That month is my time to give back to the CMTA.

For the second year running I will be hosting the “Got Nerve” event for the CMTA.

The premise of Got Nerve is simple – during the month of September to commit to moving a mile – in any fashion – in support of the CMTA. It is for ANYONE – at any level of activity, whether or not you are a part of the CMT community, whether or not you are an athlete or are just interested in getting active and healthy.

You can register for Got Nerve on Eventbrite – of the $25 registration fee, at least $10 will be donated to the CMTA (the rest going toward event printing and posting costs for t-shirts).

This year there are two registration deadlines:
– by 19 August, to receive your participant t-shirt in time for Awareness Month in September
– by 17 September, to receive your t-shirt at the end of Awareness Month in September

This year the shirts will be red.

Registrants will be eligible for prizes, kindly being donated by 2XU USA and PunkRockRacing. Prizes will include:
– Most miles for the month
– Most running miles for the month
– Most cycling miles for the month
– Most inspirational mile
– Best use of social media (using the tag #GotNerve4CMT on Instagram, Twitter, and posting onto our event page on Facebook)

So, join me. Show you’ve Got Nerve. And help me to help the CMTA – a charity, a beacon of hope, my CMT family.

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