Jonathan's London Marathon 2018 page

Jonathan Baker is raising money for MPN Voice (Guy's and St Thomas' Charity)
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London Marathon 2018 · 22 April 2018 ·

Story

Firstly, thank you for visiting my justgiving page. If you’ve found yourself on this page then it’s either because you know me and have given in to my begging, or because you have been researching myeloproliferative neoplasms (MPNs) on the internet. If it is the latter then you’ll know why it is so important to raise funds to support people diagnosed with a MPN.

If it was the former then the chances are you had never heard of myeloproliferative neoplasms (MPNs) until now, and that’s probably because they are incredibly rare, affecting 3 in every 100,000 people. They can strike people of any age, even children.

MPNs are rare cancers that strike at the bone marrow, destabilising the body's mechanism for controlling blood cell levels.  The diseases can rocket blood cell counts up, or push counts down to extremely low levels causing debilitating fatigue, blood clots, heart attacks, strokes and dramatically increase the risk of leukaemia. Experts are stumped as to what causes MPNs.  Researchers in the field hope to understand more about the mechanisms behind this disease so that they offer people with MPNs better treatment and ultimately a cure.

It’s at this point I must declare a personal interest; My mother has a myeloproliferative neoplasm - she was diagnosed 27 years ago and it is only due to the advance in both knowledge, medical science and the team of doctors and nurses that look after her that she has outlived the initial estimations. The impact on her life has been enormous, she has regular hospital monitoring including venesections and a hefty drug regime which she must adhere to. The condition and drugs have side effects. My mother whilst being very positive and active suffers from fatigue, a common side effect, as well as other things. These rare blood cancers can progress to the point when a stem cell transplant becomes the only option for survival.

So what am I doing about it? Despite being nobody’s idea of an athlete I came to the conclusion that if my mother can go through the above then the least I can do is get off my sofa and try to raise some money to help. As a result, I have signed up to run the 2018 London Marathon. Me and regular exercise have never been the easiest of bedfellows and so running 26 miles feels very ambitious but not nearly as ambitious as my fundraising target of £20,000. There is a reason for my ambition; MPN Voice and Professor Claire Harrison's team at Guy's/Thomas's not only give great support to people with MPNs, but are also doing all they can to research and investigate causes and treatments. But research needs funding and rare conditions like these don't attract as much attention as some others. These funds will be specifically designated to fund a researcher to support Professor Mary Frances McMullin who is currently undertaking some incredibly important research in Belfast into myeloproliferative neoplasms.



So, what can you do? Please donate what you can and remember that for every pound you donate you’ll be providing me with more motivation, more reason to get out running in the cold and wet weather, and more desire to break through the wall that I will inevitably hit on the big day. A donation from you would not only mean a lot to my mother, me and our family but to others with MPNs who so look forward to a better understanding of how these conditions can be managed and ultimately cured.

Whether or not you feel able to make a donation, please can I urge you to consider registering as a Stem Cell Donor. This is extremely easy to do and involves simply posting a saliva sample to the registration sites (see  https://www.anthonynolan.org/ if you are under age 30yrs or https://www.dkms.org.uk/en for those up to age 55yrs). Donating stem cells is most often entirely straight forward and as easy as donating blood - and doing so saves lives.



Donation summary

Total
£25,847.42
+ £1,085.30 Gift Aid
Online
£5,847.42
Offline
£20,000.00

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