My story

Update:  To get fit for Mount Kilimanjaro and to help to reach my fundraising target, I completed the Liverpool 10k on Sunday 12th June in 1 hour and 3 seconds.  All sponsors are very much appreciated! xx 

 

Hello all my lovely family and friends,

I am going to climb Mount Kilimanjaro in October 2011 to help raise funds for Caring Matters Now Support Group, which supports children and adults with Congenital Melanocytic Neavus.

I have a large Congenital Melanocytic Naevus (CMN), which covers 80% of my body. CMN is a large, dark brown/black, hairy birthmark which covers areas of the body.

For the first 15 years of my life I was lead to believe that I was the only person to suffer with CMN and my parents and I were not even told what the condition was called! During the first 15 years of my life I underwent 30 plus operations, resulting in missing 3 years of school. The medical staff believed that the operations were necessary, as they did not know if the condition could be life threatening. I therefore undertook many types of surgery to remove the CMN including, excisions, dermabrasion and skin grafts. I guess you could say that I was treated like a guinea pig, as the doctors didn’t really know what kind of treatment would remove the CMN.

To cut my story short...

In 1996, when I was sixteen years old, I came into contact with Dr Atherton, the leading CMN skin specialist. The way in which I came into contact with DR Atherton, was a miracle itself. A Scottish newspaper was posted through a friend’s door in Liverpool and in the newspaper was an article about a new-born baby with the same condition as me and details of a CMN skin specialist based at Great Ormond Street Hospital. Who knows how that Scottish newspaper got to Liverpool?!?!

On meeting Dr Atherton, he was able to give me a name for my condition and tell me that there were actually other children, young people and adults with CMN. I and my parents couldn’t believe our ears, as I had come to terms with the fact that I was more than likely the only one with this particular skin problem. Dr Atherton asked if I would help support other sufferers of CMN and I agreed straight away, as I didn’t want others to go through the same difficult and isolating times as I did.

Since agreeing to help support others with CMN I have been in contact with over 250 CMN patients and their families. I established a nationwide support group for CMN sufferers and their families called Caring Matters Now (CMN) in 2000. The support group holds family days throughout the year in different parts of the country. The support group has also established 14 regional support groups dotted around the UK, which enables CMN sufferers and their families to develop friendships within their home areas.

The CMN support group raises £30,000 each year to fund the CMN medical research at Great Ormond Street Hospital. The funds pay DR Veronica Kinsler to research into CMN. Dr Kinsler has already discovered many medical facts about CMN.  All donations raised from the climb will go towards supporting the CMN medical research and the CMN support group.

To find out more please go to www.caringmattersnow.co.uk

If you can, please help!

THANK YOU! x

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.

My charity

Caring Matters Now

Caring Matters Now

Charity Registration No. 1120988

Caring Matters Now has 3 main aims: 1. To support those affected by Congenital Melanocytic Naevi Syndrome (CMN). 2. To raise awareness about CMN Syndrome. 3. To raise funds for the CMN Syndrome medical research.

Donations 90

Love you to bits. We're so proud of you and all that you do. God bless you Jodi! J + A x x

Donation by Jonathan Griffiths on 17/10/11

£100.00

+ £25.00 Gift Aid

Go On Team CMN!!!!!! Take CMN to the highest height, you are all truly an inspiration. Make good time and stay safe. GOOD LUCK XXXXX

Donation by emma weaver on 05/10/11

£200.00

Wishing you the very best and "thank you" from Colin, Sheila and Eva MacKenzie xxx

Donation by Sheila MacKenzie on 02/10/11

£100.00

+ £25.00 Gift Aid

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wishing you the very best of luck Jodi, think its amazing what you are doing. xx Jen x

Donation by jennifer Grattage on 27/09/11

£10.00

+ £2.50 Gift Aid

Hi Jodi, Hope all goes well as you go up and when you come down. Will be thinking of you!!

Donation by Hilary Jackson on 23/09/11

£100.00

+ £25.00 Gift Aid

Wishing you all the best for the big climb!! Thanks for everything you do - a complete inspiration! Love from Louise, Hugo, James and Charlotte Lacy

Donation by Louise Lacy on 07/09/11

£50.00

+ £12.50 Gift Aid

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Best wishes Jodi

Donation by Bruce Buchan on 05/09/11

£20.00

+ £5.00 Gift Aid

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Hi Jodi, I remember when you spoke about CMN in school as part of an assembly. Good luck to you and your team with your climb!

Donation by Naomi Greenwood on 05/09/11

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We know that you are bigger than the mountain, so go for it Jodi

Donation by harry westerside on 19/08/11

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Best wishes Paul and Eileen Rivers

Donation by Paul Rivers on 28/07/11

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Good luck and enjoy the view !! Ricky,Claire and Joshua

Donation by ricky ford on 22/07/11

£10.00

+ £2.50 Gift Aid

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Wishing you a safe and wondrous climb, Jodi. Please take lots of notes and photos, so you can share your adventures with us afterwards. Cheers!

Donation by Pat McAdams. Nevus Outreach. on 18/07/11

£15.00

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Good luck Jodi, all the best xx

Donation by Jenni & Mark Browne on 11/07/11

Donation by Elizabeth Elms on 11/07/11

£20.00

+ £5.00 Gift Aid

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Best of luck Jodi XX

Donation by Ann Fannin on 09/07/11

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Jodi! So glad to have helped to reach your target! Hope your training is going well! Good luck to all of you! Lots of Love from Debs and Auntie Ann xx

Donation by Deborah Browne on 08/07/11

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Good luck jodi you do a fantastic job. Wishing you the best of luck and be thinking of you lol helen xx

Donation by helen o'rourke on 07/07/11

£15.00

+ £3.75 Gift Aid

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Go for it Jodi! Good luck to you and the others climbing with you. Love Sylvia, Phil, Matt and Emilie xx

Donation by Sylvia Carpenter on 07/07/11

£15.00

+ £3.75 Gift Aid

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Good Luck Jodie! Hope all goes well! xxxx

Donation by Shelley Oakes on 07/07/11

£20.00

+ £5.00 Gift Aid

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Good Luck Jodi and all the others climbing with you. With love Neil, Becky, Naomi and Joey

Donation by Becky Canning on 07/07/11

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Good luck jodi! Love jane xxx

Donation by Jane Hillard on 06/07/11

£5.00

+ £1.25 Gift Aid

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Donation by Mick Frayne on 06/07/11

£20.00

+ £5.00 Gift Aid

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You have proved over and over again that you are "fearfully and wonderfully made"! You'll do it again!!! Love you millions sweetheart. Mum xxx

Donation by Val Unsworth on 06/07/11

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Good luck Jodi x

Donation by Clare Brown on 06/07/11

£20.00

+ £5.00 Gift Aid

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go Jodi! an make sure you have lots of cake and wine after!

Donation by fiona knowles on 06/07/11

£15.00

+ £3.75 Gift Aid

Donation summary

  • * Online donations$4,559.14
  • Offline donations$556.55
  • Text donations$30.50
  • Total raised$5,146.19
  • Gift Aid$962.48

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