Edwina Frost
Anthony and Peter's page
Fundraising for Annabelles Challenge
Story
Thank you for taking the time to visit our page.
Myself and Peter Finnegan are running in the Chester Half Marathon on 15th May 2016. As you may be aware, I am a keen runner and this will be my 4th time running the Chester half marathon. I am hoping to beat my personal best of time 1hr 43 minutes. This is Pete’s first attempt at the run so will it will be good to have a running partner and some competition to spur us both on.It wasn’t a hard decision for the both of us to want to set this page up and raise money for a charity that helps raise awareness and support families that have been impacted by a rare form of EDS.
Vascular Ehlers-Danlos Syndrome is a rare type of EDS caused by an alteration, also known as a mutation in the COL3A1 gene. This gene is the instruction for making collagen type III a tough fibre-like protein that makes up a third of our body protein. When this gene is altered it causes a lack or deficiency of this collagen making the connective tissue less effective, particularly in skin, lung, uterus, intestine and the vascular system.Because many individuals with VEDS are identified only after a severe complication or death, it is likely it did not come to medical attention and therefore goes undetected.Latest figures suggest an estimated 700 in the UK are affected by vascular EDS, however less than 100 patients are registered on the NHS EDS Diagnostic Service database. The average life expectancy for those who have been diagnosed is 51.”
My courageous cousin Francesca was diagnosed with this rare form of EDS in her twenties after multiple complications. This may have been identified earlier if there was more awareness of the condition. Annabelle’s challenge aim to reduce the number of children and adults being undiagnosed or misdiagnosed by increasing awareness to the general public and medical profession. This is the only charity in the UK to support people with VEDS, so every penny we can raise will help.
We appreciate any donations we receive and would love your help in raising awareness and supporting this fantastic charity that have already helped my family.
For more information, please visit there page below:http://www.annabelleschallenge.org/
Thanks for taking the time to visit my JustGiving page.
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. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
Myself and Peter Finnegan are running in the Chester Half Marathon on 15th May 2016. As you may be aware, I am a keen runner and this will be my 4th time running the Chester half marathon. I am hoping to beat my personal best of time 1hr 43 minutes. This is Pete’s first attempt at the run so will it will be good to have a running partner and some competition to spur us both on.It wasn’t a hard decision for the both of us to want to set this page up and raise money for a charity that helps raise awareness and support families that have been impacted by a rare form of EDS.
Vascular Ehlers-Danlos Syndrome is a rare type of EDS caused by an alteration, also known as a mutation in the COL3A1 gene. This gene is the instruction for making collagen type III a tough fibre-like protein that makes up a third of our body protein. When this gene is altered it causes a lack or deficiency of this collagen making the connective tissue less effective, particularly in skin, lung, uterus, intestine and the vascular system.Because many individuals with VEDS are identified only after a severe complication or death, it is likely it did not come to medical attention and therefore goes undetected.Latest figures suggest an estimated 700 in the UK are affected by vascular EDS, however less than 100 patients are registered on the NHS EDS Diagnostic Service database. The average life expectancy for those who have been diagnosed is 51.”
My courageous cousin Francesca was diagnosed with this rare form of EDS in her twenties after multiple complications. This may have been identified earlier if there was more awareness of the condition. Annabelle’s challenge aim to reduce the number of children and adults being undiagnosed or misdiagnosed by increasing awareness to the general public and medical profession. This is the only charity in the UK to support people with VEDS, so every penny we can raise will help.
We appreciate any donations we receive and would love your help in raising awareness and supporting this fantastic charity that have already helped my family.
For more information, please visit there page below:http://www.annabelleschallenge.org/
Thanks for taking the time to visit my JustGiving page.
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. So it’s the most efficient way to donate – saving time and cutting costs for the charity.