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HSCT MS Treatment for Jonathan MS Pearce

£14,112 of £20,000 goal

Raised by 294 people in 3 months
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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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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Thank you sooooooooooooooo much to everyone who has sent this appeal on GoFundMe to over £10,000, which, together with my appeal bank account, puts the generosity at £22,000. Bonkers kindness.

I just thought I would share with you some comments from other users of Moscow as to why I am choosing Moscow, since this is often asked of me. Simply put, because it is better:

>>>>>>>>>>
Russia has a decade[s] of experience and has incredible cure rates! I chose Russia over other options. Loved it!! Best care I’ve ever had, I have such fun memories of the hospital and staff. Dr. Fedorenko is so special. I’m two months post hsct and already working out again and back to grad school full time

>>>>>>>>>>
The criteria [for the UK] is ridiculous, not enough experience compared to Moscow. Moscow is all completed in hospital in one full straight session, unlike U.K. where you're sent home between sections, very unprofessional in my opinion. Dr F's reputation is world renowned. I could go on.

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I chose Russia over the UK due to experience and the fact it’s all inpatient. The UK has far less experience than Russia but at more than double the cost along with a ridiculous inclusion criteria.

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I chose Russia because of Dr Fedorenko’s reputation - peer reviewed etc, 100% inpatient with a full hospital access onsite if required and cost.

>>>>>>>>>>
Dr F and his team are absolutely amazing.

>>>>>>>>>>
I had successful HSCT for my PPMS in Russia in 2014 and was extremely happy with my treatment there (and the outcome, obviously!)
I think it's great that there are options to suit different requirements (inpatient/outpatient, etc) and also that there are more treatment slots in total, because Time is Brain and the sooner one can be treated, the better!

>>>>>>>>>>>
Currently, I would definitely choose HSCT in Moscow over HSCT in London.

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I’m here in Russia now and one million percent choose the right place and the people here with me share the same feeling

>>>>>>>>>>>
I chose Moscow over London primarily due to London’s infection control issues, but also because I didn’t want rATG. In my opinion, Dr F and his team are the best in the world. My very worried Mum now agrees after seeing how well they treated me.


etc. etc. These sort of opinions seem endless.

I know I'll be in good hands. Thanks again.
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I thought this comment from another sufferer explains so well why I am being so rushed about this treatment:

HSCT is the *only* treatment so far found effective to halt the progression in all forms of MS, including PPMS. And is especially effective in such rapidly evolving aggressive MS. But time is of the essence in undergoing HSCT for such a case as described. The most important thing learned from all the years of HSCT-for-autoimmune disease clinical study work is that HSCT performed earlier in the course of the disease is nearly universally more beneficially effective compared to transplanting later in the disease evolution when there is a greater degree of irreversible accumulated disability. If I knew then what I know now, I would have wanted to be transplanted the day after I was diagnosed before I had any obvious signs of outward disability. In fact, you'll hear something similar from most other HSCT recipients that will likely tell you their only regret was not doing it sooner. The objective is to stop the disease *before* there is a buildup permanent disability. Lesson learned: don’t wait until it’s too late.
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Raised by 294 people in 3 months
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