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Supporting people affected by Charcot-Marie-Tooth disease.


Do Not Read This Article Without A Credit Card In Your Hand

How do you say to a child, “Your physical body will only get worse for the rest of your life. Today is your peak, and it only goes downhill from here”?

And she is only eight or nine years old?

It doesn’t matter that she has just been diagnosed with a mild case of CMT, a genetic condition that damages peripheral nerves that should pass on commands from the brain to the muscles and pass information to the brain about sensations such as pain, heat, cold, touch — most importantly for balance. All she hears is that the disease is incurable and progressive, meaning a bomb has just been planted in her body that eventually will wreak devastation ranging from an inability to use her hands to being in a wheelchair.

About 3 million people around the world have CMT. Although they carry the offending gene from birth, they generally only begin to manifest symptoms as they age. It is not unusual for the disease to remain undiagnosed for years, since it is often missed by doctors who don’t have enough experience with it. People with a mild enough case might be able to hide the gradual physical impact with braces or orthotics. So there are top business executives, movie stars, perhaps your neighbours, who have CMT — and you don’t know it unless you know what to look for.

There is no cure for CMT. One reason is that diseases that affect many more people are better bets for pharma companies because they create a larger market for new drugs. Everyone is touched by cancer in some way; not so many are exposed to the effects of CMT. But there are folks out there trying, and I want you to help them.

Don’t give us your rent or car payment or grocery money. But donate the money you never expected, like a tax refund, or when you paid a bill twice and they returned a cheque to you. Take that dish with loose change in it from your dresser or cup holder in your car down to the bank, and donate that amount to help find a cure.

I know you are asked to support all sorts of worthy causes, from buying raffle tickets to donating to Children in Need. Haiti needs to be rebuilt (again). It is Breast Cancer Awareness Month. Your child wants you to pay for a school trip. Your neighboir is fundraising for MS. Your cousin wants you to support his Fun Run for this cause or that one. But if you can find it in your heart (and wallet) to help find a cure for CMT, the families of these 3 million people would be eternally grateful.

So would I.


If you can help, click on the button below to make an instant donation to the Research Fund – or you can send a cheque to the usual address, or text DOSH14 £10 to 70070.

Or if you would like to do a more active challenge to help raise funds for Research, check out our new Campaign page at http://campaign.justgiving.com/charity/cmt/beat-cmt 

Let’s see if we can reach that target!


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