Charity Spotlight: CMT Awareness Month

Over a decade ago, I had motivational profiling done at work.  My boss at the time wanted to understand team dynamics better, to help her to better manage us and optimise some big projects we were about to launch.  There were three types of motivation a person could have – achievement, affiliation, or power.  It was all pretty complex stuff, but one of the key things about me was that I am hugely motivated by service, the feeling that I am playing a role in achieving a greater good.  In the motivational speak, I was off the charts on Type 4 Power. 


I have done a lot of charity fundraising.  From my first real foray into using sport to raise money for charity in 2003, until today and my efforts to raise funds for the CMT Association, I have found it hugely inspiring to have personal goals (motivated by achievement) which I’ve been able to combine with helping out a cause (you guessed it – that type 4 power thing in the management stuff I did shines through RIGHT HERE).

I’ve written before about how I went about choosing the charity that I support.  But just as important as choosing the charity is actually going out and raising the funds.

When I first started to do physical challenges to raise funds, it was pretty easy for me to raise funds.  I had never done anything like what I was doing before, so I sent emails around letting people know what I was up to and I invited people to make donations.  It’s fairly easy to fundraise this way – write an email, explain what you are doing, and include a link so that people could donate to support your effort.

And it worked for me.  I fundraised for a half marathon walk, a marathon walk, and a 60k breast cancer walk this way.  I felt comfortable asking people to support me because these were events that really pushed me out of my comfort zone.  They were the very beginnings of my path to an active healthy life.  But then it became harder to ask for support.  I felt less comfortable asking people to donate to my chosen charity in honour of the triathlon I was doing – because I had already done a triathlon.  I started to only ask for charity support when I did “big” things – like swim across the Chesapeake Bay, or USA Paratriathlon nationals – my very first paratriathlon-specific race.

But I have been wondering, thinking… How can I continue to raise funds for the CMTA?  What specific thing could I do next?


Inspiration comes from many places.  One of my key sources of inspiration has been the CMTAthletes group on Facebook – the Group is for anyone with CMT (my nerve disease) who is interested in getting active and healthy – because if you have a body, you are an athlete.  Every day I can look to the group and read about someone trying something new, pushing themself to do a little more, to be a little braver and stronger.  The athletes group has been around for a year and a half now, and probably the one thing I have consistently read about is how being active has helped people to feel better. 

This I know – exercise is medicine.  For those of us with CMT, being active is the best hope we have right now to manage our disease.  There is no cure.  But an active healthy lifestyle can make us stronger, happier people.  And I think being active is the best choice for EVERYONE.  After all, if you have a body, you are an athlete. 

Inspiration: could I create a fundraiser for the CMTA that would celebrate the ability to be active?  That could be designed to be inclusive, open for anyone, of any ability?


It is hard to put an idea out there.  Ideas are personal things.  You never know if what you think could be successful will be successful.  You never know if your idea will resonate with others.  Unveiling the personal is scary.  But I did it. 

This past weekend I launched the “Got Nerve” CMT Awareness Month Event, to benefit the CMT Association.

September is CMT Awareness Month.  Got Nerve is an awareness month virtual event, with participants committing to do (at least) a mile of activity in September 2013, either all at once or across the month, in whatever activity they choose. 

You can register for Got Nerve on EventBrite.  At least $10 of the $25 entry fee will be donated to the Charcot Marie Tooth Association.  Each finisher will receive a finisher t-shirt, to be sent in early October 2013.

And being the complete social media junkie that I am, and lover of inspiration, there are some incentives to share your miles and stories.  Prizes will be given for:

* The most miles logged (an honour system will be used; total miles for September to be submitted via the event Facebook page or an email)
* The most inspirational mile story shared (judge’s discretion)
* The best use of social media around this event (judge’s discretion)

Share on Facebook and via Twitter & Instagram using the hashtag #GotNerve4CMT.

Finally, in case you want to ask people to donate to your efforts, we have also set up a link for direct giving to the CMTA.  Direct donations can be made at—but remember, you need to register on EventBrite to get a t-shirt and be eligible for prizes.


I am excited and inspired by this event – planning and launching it has filled me with hope.  I hope it leads people toward activity.  I hope all types of people participate – from seasoned athletes to those who have never dreamed of doing a mile of anything.  I hope it raises a good amount of money for the CMTA, who are funding such critical research into a cure for CMT – we seem closer than ever to a world without CMT, but that dream requires funding to turn into a reality.

Thank you so much for your support.  And tell me…

Have you Got Nerve?

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