Sarah Jones

Sarah Jones - London Marathon Journey

Fundraising for Royal Free Charity
raised of £10,000 target
by 165 supporters
Donations cannot currently be made to this page
Event: London Marathon 2021, on 3 October 2021
In memory of Doris Langton
Royal Free Charity

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RCN 1165672
We fund services, equipment & research to help our hospitals go further, faster


Hi there!! I'm Sarah, nice to meet you!  

Thank you for visiting my page - I hope that you enjoy reading it and following my journey to what will probably one of the hardest things I have ever done physically and voluntarily.  If you can donate, even a little, I would really appreciate it.

I was so lucky to be running the London Marathon in October 2021 as part of the team from The Royal Free Charity for neurology research at The Royal Free NHS Trust, more specifically the Epilepsy Research Project, which covers all sites of the Royal Free Hospital. 

This is a charity and cause which I have real personal links to and I am honoured that they have given me a place to run for them.  As some people will know, I have recently been treated by The Royal Free at various of its sites, but my family has a much longer connection with the hospital.  My grandmother was treated by the Royal Free at its' original site in Grays Inn Road. 

It is my grandmother , Doris Langton, and my other grandmother, Betty Taylor, who I am running this in memory of.  Both amazing, strong women who refused to look back at past events and only looked forward to the future. From them I get my love of art, music, dance, literature and also science, technology and engineering.  I hope they would be proud of me now. 

I am running to raise funds for neurology across the Royal Free Trust - more specifically The Epilepsy Research Fund.  This fund provides the resources for research into epilepsy across all sites of the trust.  The epilepsy research project brings together doctors, nurses, scientists and patients who are all focused on testing new medicines and techniques in clinical trials, which means the timeframe for bringing in new treatments to patients will be substantially shorter than it currently is.

Epilepsy is a condition which has a huge impact upon the lives of those who suffer from it.  It is one of the most common chronic neurological conditions but also one of the least understood.  The impact of epilepsy extends well beyond the direct effects of seizures and includes numerous challenges which may lead to disability and severely reduced quality of life.  There are the more obvious issues: not being able to drive; use anything heated; restricting sports and social activities,  all leading to a feeling that independence has been lost.  More support is needed for simple and everyday things which become unsafe because of the risk of seizures, which means that relationships with family and friends can become strained.  People with epilepsy often suffer from physical and functional issues, such as loss of short and/or long term memory; cognitive challenges; medical and physical comorbidities and ultimately it can be fatal.  

Epilepsy is something that many people are scared of and find hard to accept; seizures themselves are worrying for those observing and embarassing for those suffering from them.  The cognitive issues which arise from epilepsy are hard for others to understand, as these vary from person to person and even change over time in each invidual: for example it is hard to understand why someone can suddenly lose their short term memory (or parts of it), they cant remember facts/figures/names, suffer from mood swings, or suddenly find that their 'time line'of events becomes scrambled.

This is even more of an upheaval when someone has late onset epilepsy; their whole world, the way that they operate changes, and to others it can seem like they have changed personality or aren't the same person they thought they knew.  Late onset epilepsy is incredibly common and occurs for a variety of reasons but all of these practical and emotional changes lead to a big upheaval in quality of life and people with epilepsy are more likely to suffer from depression in addition to other physical and social issues.

I, and other close family members, have personal experience of epilepsy and the impact that it has upon life (however it is caused) and it is a very hard condition to manage.  Treatment at this point consists primarily of trialling various medicines, of which the side effects are often as debilitating as the condition; for example personality and mood changes, confusion and depression.  The type, frequency and dose of these medicines is very much on a basis of 'try it and see' as it is personal to each person, but because epilepsy can be made worse by stress, illness, tiredness, hunger and a whole plethora of other issues that occur in everyday life, it can be very hard to stabilise.

Unfortunately the brain and the way it works is something that we know relatively little about.  Research is key to a more detailed understanding of the causes of of the condition and to provide more effective treatment.  This is vital to ensuring that those diagnosed can have a better quality of life moving forward.  The Charity does so much to help and support people when they need it most as well funding research such as this.  It is vital that we support them as much as possible.  Please support The Royal Free Charity, the Epilepsy Research Fund and myself by raising money for the vital research into this condition and its' treatments. 

I initially picked this cause because I had a couple of seizures before lockdown which I was told were  non epileptic.  As my cousin suffers from epilepsy which has really affected her life quality, that experience gave me a wake up call as to how much of an impact epilepsy could have on someone’s life..  

 The Risk Assessment App I am raising money for will hopefully help everyone with epilepsy and seizures to manage risks from day to day and keep their lives.

“To live their best life, people with epilepsy have to strike a balance safety and activity. The Epilepsy Initiative team, based at Royal Free hospital have created an ERA scale app (Epilepsy Risk Assessment app) to assess safety for people with epilepsy around physical safety, epilepsy-related safety and mental health.  This App gives us a structure for assessing these factors, and people can do this themselves and use this as a discussion point for their clinic appointments.  It can also be done by health professionals. The current COVID situation means we have had to do a lot of things remotely, and this App gives people an in-depth analysis of daily life.  We are very excited to be partnering with The Royal Free Charity.  This is not just for The Royal Free, it is for people with epilepsy throughout the country and later around the world.  We will share developments as they go along, and if you have any queries then please feel free to contact us.”

The cost to develop this app will be £10000 and I am desperate to raise this as quickly as possible so work can start, and people can benefit as soon as it is ready.   So whilst the marathon did not go ahead in October 2020 it was virtual - I warn the 26.2 miles in London from sites in the Royal Free Trust on my own, with amazing support from friends and The Royal Free Charity and am now training for 2021.

Please feel free to offer encouragement, jokes, feedback, advice....anything really, but please please can you donate to the cause I’m running for.  Your money will ultimately make a real difference to peoples’ lives.  I'll even buy you a drink next time I see you!!

About the charity

Royal Free Charity

Verified by JustGiving

RCN 1165672
The Royal Free Charity supports staff and patients across the Royal Free London NHS Foundation Trust. From small acts of kindness to huge investments in research, everything we do changes lives for the better. We support our hospitals to go further, faster – delivering impact locally and globally.

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