As you may know, I took up triathlon as a way to stay physically fit, and strong, following what I thought was deterioration in strength caused by Charcot Marie Tooth disease. I was diagnosed with CMT in 2004, with this confirmed genetically in 2007. Having CMT is something that was suspected for my whole life I think, because my mother also had it. CMT impacts 1 in 2500 people, making it the most common nerve disease, but probably the least well known, as those who have it can spend their entire lives without a diagnosis.
This week is CMT Awareness Week, supported by the CMT Association in the US . The CMTA has some great initiatives happening, not least of which is the search for a cure for CMT. I made a choice in 2009 to focus my fundraising in support of the CMT Association STAR initiative . STAR is a comprehensive research programme which was started to find and develop a cure for CMT Type 1A (the most common form impacting 50% of all diagnosed CMT cases). STAR will cost more than $10 million, all funded via donations and the CMTA organisation. A huge fundraising – and awareness – challenge.
The results are exciting. Already 800 compounds have been identified (including 10 already approved compounds) which could have an impact on the production of myelin protein (which is overproduced in those diagnosed with CMT1A). The search for compounds to manage myelin and nerve function in those with CMT1A will also have an exciting impact on the research into other forms of CMT, and also MS and ALS (Lou Gehrig’s disease). The quest for the cure is expensive – especially for a disease that not many people have heard of. I am glad to lend my support to fundraising and awareness building of these efforts.
Separately, in early 2010, I was part of a group of triathletes who had connected on Twitter and decided to meet for a swim. We joked about how we would find each other – with one of us saying “we should have swim caps”. Well, I connected the dots and with the help of the talented illustrator / animator Pascquale D’Silva, the Twitter #swim cap was born.
100 caps have been sent out across the world – to Australia, Malaysia, Southern and Northern California, to Kelowna and Toronto, from Leeds to Devon, to Boston and South Carolina, and places in between. In each mailing, I have also included a little bit about CMT, inviting recipients to learn more about the disease, and to donate to the search for a cure if they want to.
They’ve been in pools, oceans, and lakes.
Check out the cap on a Lake swim in Canada !
Thanks so much for your support.
And behold – the Twitter #swim cap collection!
Helen and Tom Brett
Thanks for all of your support!