Charlene Burkmar

Charlene's page

Fundraising for Multiple System Atrophy Trust
£4,060
raised of £2,200 target
Donations cannot currently be made to this page
Event: London Marathon 2023, on 23 April 2023
In memory of Adrian And Nita Evans
Multiple System Atrophy Trust

Verified by JustGiving

RCN 1137652
We support families affected by MSA to increase knowledge of this condition

Story

I am running in memory of my Dad to support a cause that means a lot to me and really needs exposure. My motivation is two fold, one to raise money for the MSA Trust (our only source of knowledge through the suffering), and two to raise awareness of this disease Multiple System Atrophy, a Neurodegenerative Disorder, that causes gradual damage to the nerve cells in the brain. There is currently no cure for this disease or to slow its progression, which was far more rapid than we were prepared for.

My Dad suffered from this disease from the age of 60, passing at 68. 
Having retired a few months earlier, so that he could spend more time with his first born granddaughter and carrying out his charity and community work.

It took a long time to diagnose, following a number of misdiagnoses, because it is so rare and difficult to identify. It was very difficult to gain insight and knowledge on what was happening and would happen. The medical profession we found really weren't experienced in this disease, so MSA Trust was our go to. Over time he lost his ability to walk, move his muscles and talk leading to locked in syndrome for the last two painful years of his life. We watched a powerful man with a strong presence having his life be taken away from him and unable to communicate his very active and extroverted brain, which is unimaginable for most people, including me.

His illness not only took his life too early and caused unimaginable suffering for him but also impacted the whole family, whilst we were getting married and starting families ourselves, a time which should have been so joyous for him. It ultimately caused, we believe, my Mum to suffer from early onset Alzheimer's at 65 and pass away in 2022. 

Please sponsor me. Training for the London Marathon is a physical and mental challenge, and your support would be very much appreciated as I spend my Saturday mornings hitting the miles and afternoons moaning about the pain.

Thank you so much,

Charlene 

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About the charity

Multiple System Atrophy Trust

Verified by JustGiving

RCN 1137652
The Multiple System Atrophy Trust is the UK and Ireland's only charity dedicated to providing specialist support to all those affected by MSA; a life-limiting neurodegenerative brain disease. We rely entirely on voluntary donations to provide our free support services.

Donation summary

Total raised
£4,059.05
+ £684.00 Gift Aid
Online donations
£4,059.05
Offline donations
£0.00

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