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HSCT MS Treatment for Jonathan MS Pearce

£14,362 of £20,000 goal

Raised by 298 people in 7 months
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I am presently a teacher, author, blogger and public speaker, and more importantly a father to twin boys and partner to Helen. I was recently diagnosed with Primary Progressive Multiple Sclerosis for which there is presently no drug treatment in the UK.

The only option for me is to undergo HSCT: "Haematopoietic stem cell transplantation (HSCT) is an intense chemotherapy treatment for MS. It aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells." 

Basically, I want to crtl, alt +del my immune system. 

As fun as this sounds, it is not without its massive risks. But you gotta do what you gotta do. Something's got to keep allowing me to cultivate these massive mutton chops.

Successful treatment means that the MS symptoms will stop progressing, which is why it is important to get it done as soon as possible. This will allow me to continue working and continue contributing to society in the same way. There are several options for doing this, and the most likely is to do it privately in, most probably, Moscow, at some considerable expense. This fundraising is to contribute to the treatment and recovery expenses. It is, however, available on the NHS at one hospital in London, but there are many hoops to jump through and it is unlikely I will qualify, and if I do, it will not be for the best part of a year or so. Therefore, I am looking to get this treatment as soon as possible. Look, I've done a fun disembodied head video to accompany this: https://youtu.be/OU86vVAPCxA

The fundraising will fund treatment that will require inpatient chemotherapy and isolation in Moscow for 30 days, with all the drugs and whatnot that goes with this. If the pound doesn't crash post-Brexit (ha!), this treatment should cost around £40,000, but there are many more costs on top of this (travel, visas, etc.). I am looking to create a few events locally, so keep your eyes peeled.

STOP PRESS. I have been booked on the treatment course in Russia in March and so time is certainly of the essence! This is fabulous news as I will not be waiting for perhaps a year or so to be told that I won't be accepted on the NHS. I would love to go on the NHS (though exceptionally unlikely in any event) but I can't turn down the opportunity of getting my treatment as soon as possible so that my symptoms are halted as early as possible.

For more information on the sort of needs for people seeking this treatment, AIMS are a new MS charity with a focus on HSCT - find out more here: https://www.facebook.com/pg/aimscharity.org/about/?ref=page_internal They look to be an awesome charity, helping people in situations similar to my own.


Life throws up some challenges. Sometimes you gotta meet them head-on.

Bear in mind that GoFundMe by default ask for a cut/tip - you can change this and set it to £0 - don't let it put you off!
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Here is possibly my final update for all you kindly people who donated money time and effort to my appeal for HSCT in Russia. The treatment has so far been a total success, but only time will tell whether it's has worked for sure. Thank you so much for all those who followed my video diaries throughout my treatment. I have put these videos together with some words and formed a blog that details and documents my experiences throughout my time in Russia.

Hopefully, this blog will be useful for those many people who are presently and who will follow in my footsteps as I have followed in so many others.

Please check it out: https://hsct4msexperiences.blogspot.com/

My final video update is here for your delectation:

https://youtu.be/qe-zIsJvOJ0

Thanks, you legends!
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Here is my news in video form - all good! Have a watchy watch.
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Well, it's about time I updated you all on what's going on over here in Russia. I have been here 10 days now and I am in fantastic hands. The hospital is superb, being very clean, exceptionally well-organised and full of equipment that appears to be better than the equipment back at home! An example of this would be the 3T MRI scanners that are twice as powerful as the ones I have been using back at home. This means that, instead of three lesions on my brain and spine, they have found 11. This fully explains my worsening disability as far as movement is concerned because some of those ones are on my spinal cord. My diagnosis of primary progressive multiple sclerosis is definitely upheld with what we have found out here.

The great news is that I passed all my pretests and was therefore eligible for the full treatment here. Everything has gone well so far and they have spent three days extracting my stem cells after stimulating them. I am presently on a day off before my chemotherapy starts tomorrow. They shaved my hair off yesterday which was all good fun and I look like a proper boiled egg. I've met some lovely people here and have even been involved in an American documentary film that is trying to put a HSCT on the map.

The treatment here, HSCT in general, is the only game in town. I am utterly adamant of this now. The data, the research, the evidence, what I have learnt here means that HSCT should be the primary treatment for MS (no matter what type of MS you have) and should be put front and centre stage as soon as you are diagnosed. I have done exactly the right thing in getting here as soon as possible. I saw a neurologist yesterday who was really happy that, though I had primary progressive multiple sclerosis, I was quite early on in my journey and therefore this procedure stands to be more successful and more effective.

Although the next phase is chemotherapy and this carries obvious risks, I am in really high spirits and am thoroughly hopeful that this treatment will help me to overcome my progressive MS. I can't thank all of you enough for your massive generosity in facilitating me getting here. The hope and community that exists in all the people who are receiving treatment here is incredible and it is underwritten by some superb practice by Dr Federenko and his amazing team. Someone was telling me the other day that the famous Dr Burt, the big HSCT guru in Chicago, is about to release some data and research that will thrust HSCT right into the limelight. Drug treatments are merely sticking plasters and HSCT is the only thing that gets remotely close to doing something fundamental about the condition for MS sufferers.

Anyway, I hope you are all well and thank you from the bottom of my heart again. Big love to you all, always.

You can follow my video diaries here: https://www.youtube.com/watch?v=w-Z5-LlZmi4&list=PLCk4VTcaSnT11qTk0cgow-l6irSvSXCeo

JP
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Hello everybody, a little update for you. It's just four days before I leave for the sunny climes of Moscow. I wanted to publicly announce how wonderful Tracy Robinson is of St Mary's Catholic Primary School who organised a fundraising event last night which acted as a reunion for school staff who haven't seen each other for the best part of up to a decade or more. The event raised over £1000 towards the appeal. I am incredibly grateful to her for the amazing work she has put into this fundraising appeal. Together with a school run for the children, she has raised in total around £1700 as well as donating personally. She is right back on the Christmas card list…

Big love to Robbo and her geniusness.
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£14,362 of £20,000 goal

Raised by 298 people in 7 months
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