Chris Pitcher

Chris Pitcher

Racing to the King for the SRF

Supporting

Total raised so far£0.00

Total plus Gift Aid: £0.00

Target£0.00

Raised offline: £0.00

My story

[p][/p][lt]div id="_mcePaste" style="position: absolute; left: -10000px; top: 0px; width: 1px; height: 1px; overflow: hidden;"[gt]This weekend I will be taking part in Race to the King, a 53.5 mile walk along (and up and down) the South Downs Way from Arundel to Winchester Cathedral, to raise money for The Sohana Research Fund (SRF). Billed as an ultramarathon, I will be part of a team walking the route non-stop through the night and we hope to finish in under 24 hours.[lt]/div[gt] [lt]div id="_mcePaste" style="position: absolute; left: -10000px; top: 0px; width: 1px; height: 1px; overflow: hidden;"[gt]I have raised money for the SRF before, and thank you for your previously generous support, but it has been a couple of years since the last event and so to recap…. The SRF was set up by friends of ours whose daughter, Sohana, suffers from Epidermolysis Bullosa (EB) which is a currently incurable genetic condition which causes the skin to blister and shear at the slightest friction. Sohana’s type of EB is progressive, life threatening and very painful. It causes children to gradually lose the skin over their bodies, leading to intense pain and deformity associated with scarring. We first found out about EB when our eldest daughter, Elisabeth, started school with Sohana’s twin sisters and have been supporting the SRF since.[lt]/div[gt] [lt]div id="_mcePaste" style="position: absolute; left: -10000px; top: 0px; width: 1px; height: 1px; overflow: hidden;"[gt]The SRF is working on behalf of DebRA, the UK registered charity for EB suffers, specifically to advance medical research into a treatment and ultimately a cure for EB. Recent medical advances have made this a real possibility. Since I last emailed the SRF has funded three clinical research trials and two novel clinical research studies, projects which tend to run from 2-5 years. Under the team led by Professor John McGrath, exciting progress is being made but further funds areneeded to complete the research.[lt]/div[gt] [lt]div id="_mcePaste" style="position: absolute; left: -10000px; top: 0px; width: 1px; height: 1px; overflow: hidden;"[gt]Please give as generously as you can. All donations go direct to the Sohana Research Fund to advance the medical research that will hopefully make a real difference to Sohana and the lives of all families affected by EB.[lt]/div[gt] [lt]div id="_mcePaste" style="position: absolute; left: -10000px; top: 0px; width: 1px; height: 1px; overflow: hidden;"[gt]We realise awareness for EB needs to be raised so for further information about Sohana, RDEB and the research, please visit the website (www.sohanaresearchfund.org).[lt]/div[gt] [lt]div id="_mcePaste" style="position: absolute; left: -10000px; top: 0px; width: 1px; height: 1px; overflow: hidden;"[gt]Thank you for any support you can offer,[lt]/div[gt] [lt]div id="_mcePaste" style="position: absolute; left: -10000px; top: 0px; width: 1px; height: 1px; overflow: hidden;"[gt]Chris[lt]/div[gt] [p] This weekend I will be taking part in Race to the King, a 53.5 mile walk along (and up and down) the South Downs Way from Arundel to Winchester Cathedral, to raise money for The Sohana Research Fund (SRF). Billed as an ultramarathon, I will be part of a team walking the route non-stop through the night and we hope to finish in under 24 hours.[/p][p]I have raised money for the SRF before, and thank you for your previously generous support, but it has been a couple of years since the last event and so to recap…. The SRF was set up by friends of ours whose daughter, Sohana, suffers from Epidermolysis Bullosa (EB) which is a currently incurable genetic condition which causes the skin to blister and shear at the slightest friction. Sohana’s type of EB is progressive, life threatening and very painful. It causes children to gradually lose the skin over their bodies, leading to intense pain and deformity associated with scarring. We first found out about EB when our eldest daughter, Elisabeth, started school with Sohana’s twin sisters and have been supporting the SRF since.[/p][p]The SRF is working on behalf of DebRA, the UK registered charity for EB suffers, specifically to advance medical research into a treatment and ultimately a cure for EB. Recent medical advances have made this a real possibility. Since I last emailed the SRF has funded three clinical research trials and two novel clinical research studies, projects which tend to run from 2-5 years. Under the team led by Professor John McGrath, exciting progress is being made but further funds areneeded to complete the research.[/p][p]Please give as generously as you can. All donations go direct to the Sohana Research Fund to advance the medical research that will hopefully make a real difference to Sohana and the lives of all families affected by EB.[/p][p]We realise awareness for EB needs to be raised so for further information about Sohana, RDEB and the research, please visit the website (www.sohanaresearchfund.org).[/p][p]Thank you for any support you can offer,[/p][p]Chris[/p]

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