95 HSCT in the news

I am a teacher and finally finished work on Friday for the five week Summer holiday.  Some of my colleagues have plans for travel to exciting places, but I’m mostly staying home and trying to save money.  The weather isn’t exactly conducive to having fun, also, I can’t walk with an umbrella and my raincoat has a broken zip, but I’ll try my best!

I should have an appointment with the team in Sheffield in a couple of weeks and will find out if there is any chance of them treating me here. If that leads to nothing, I want to get myself to the clinic in Russia as soon as I can.  This uncertainty makes life feel a bit in limbo and it’s difficult to make plans.  Over the last few weeks I have wondered about trying to book a cheap last minute holiday while I’m off work, but it feels wrong to be spending money on such things until I know which direction I’m going.  Not that I have much spare money – reducing my working hours by a fifth has obviously reduced my income by a fifth, so whilst that’s better for my health, it’s a lot worse for my bank balance!  There is no system to support those with a disability or health problems who can still work, but can’t manage full time hours, although I have just found that I may be eligible for PIP (Personal Independence Payment) so will start the gruelling assessment process while I’m off work. 

So, to HSCT in the news …

The profile of HSCT is rising all the time and it will soon be very difficult for neurologists to dismiss it, as some do now. I was delighted to hear this bit of news recently – the team in Sheffield have recently won the NHS Futures Parliamentary Award for their pioneering work on stem cells transplant (HSCT) to treat Multiple Sclerosis.   Click here for a full report …

Pioneering Multiple Sclerosis Stem Cell team win national NHS future Parliamentary Award

Congratulations Professor Sharrack, Professor Snowden and the rest of the Transplant team ???

I have written before, about the Hollywood actress, Selma Blair, who was diagnosed with MS a couple of years ago and has spoken openly in the media and via her Instagram account about her struggles with the disease, coming to terms with the diagnosis, the impact on her life and her search for the best treatment.  For the last few weeks, the content of Selma’s online activity has led many of us to believe that she was undergoing HSCT with Dr Burt in Chicago, and it turns out we were right!

Selma is in the early stages of recovery at the moment and I wish her well.  Once she’s strong enough, I’m sure she will become a truly fabulous HSCT advocate ??

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As you know, we have paused our fundraising efforts for the time being, until we know whether further funds are needed, however, there is still some activity in the back ground and I was delighted to receive a surprise donation of £75 this week.  The money came from a collection box in the Cash and Carry at Stephensons, so I’d like to say a big thank you to all their customers and staff.

The Cash and Carry is well worth a visit, even for those of us not in the catering industry …many kitchen related bargains to be had!  Find out more here …

Stephensons  

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In my last blog post, I listed 9 MRI scan tips and was struggling to come up with another to round it up to a perfect 10. Over a week later and I’ve thought of one!

10. DON’T start to cry when you are in the machine! You can’t move your head or raise your hand to your face, so the tears form two perfect puddles over your eyes …not comfortable at all and plays havoc with your mascara.

82 Fundraising update

Even though I’m having a bit of a break from fundraising, there has still been some activity in the background, which I thought I’d report back to you.

A couple of weeks ago, Bobby put on his sports gear and took part in his very first fun run. Thank you so much Bobby …we are all very proud of you and thankful for your contribution to our funds.  We don’t have a total yet for Bobby’s fun run so if you feel like adding to his fundraising efforts, please donate via the link below and give Bobby a mention.

This morning, another group of athletes donned their running gear to take part in the Manchester Gung Ho 5K Challenge.  Niamh, Becca, Tiah, Alex, Jordan, Duane and Matt are all part of the Stephenson’s team, who never fail to support our fundraising efforts.

Gung Ho is a 5K with a difference…the course involves running, climbing, jumping and sliding over various inflatables and other obstacles, with a bit of foam thrown in for good measure!  The intrepid team had a great morning and managed to complete the course in around 40 minutes.  I’m told it was great fun, but “much harder than we thought it would be”!

Well done all of you and thank you so much for your efforts ?

We’ll have a total for the team soon, but in the meantime, if you’d like to sponsor them , please click on the link below and mention them in your comment.

GoFundMe

Stephenson’s Catering Equipment

74 A few thank yous

With just one day to go until our fundraising evening, it’s time for me to thank a few people.  It’s been really hard work to put this event together and in particular, to do so with minimal expenditure.  We have had so much amazing support and I am truly blessed to have so many kind people in my life.  

I’d like to thank the following for their amazing generosity…

  • McCann Manchester for letting us use their fabulous venue.  A special thank you to Joe for arranging this for us.
  • Sharon from Spoilt for Choice, Cheshire for decorating the room.
  • Dave Gilmore from David Gilmore Design for all his hard work with the tickets, slide show and various other graphics.
  • Swan Brewery for providing all the beer and lots of other help and ideas.
  • Heather and Nick Chick, chefs extraordinaire, for preparing the food.
  • Our wonderful musicians …                          

Ashleigh

Dan and Chris

  • Everyone who has donated raffle prizes.  We have received so many lovely items and we are touched by your kindness.  The following businesses have also kindly donated …

Essence Hair Studio, Heaton Chapel (find them on Facebook and Instagram)

Seed Beauty, Edgeley (find them on Facebook and Instagram)

Droylsden Subaqua Club 

The Vintage Village, Stockport

Inspire Travel

The Bun & Bones Club, Hazel Grove (find them on Facebook).

Many friends and family have pulled together to help get things in place, but I’d like to give special thanks to Connor, Niamh and Sophie who have given up a lot of their time to take the pressure off me and make sure everything is in place for tomorrow.  They really have been amazing!  Also, thank you to Glenda who has travelled over from Germany and to Jimmy, Gill, Anna and Zeb who have come up from Herefordshire for the weekend …your help and support is very much appreciated.

Lastly, thank you to everyone who has bought a ticket and also to the people who are unable to come but have made a donation.

See you there! ????

GoFundMe

38 Half Marathon sponsorship update

On Sunday 14th October, 5 amazing people took part in the Manchester Half Marathon.  For everyone except Nick, this as the first time they had run this distance, so it was a huge challenge.  They all worked so hard to prepare and achieved amazing times when they crossed the line. 

I have finally counted up all the promised sponsorship money for the event and we are delighted to let you know the total raised is …

Thank you so much Heather, Nick, Gleaves, Connor and Niamh …you are amazing! 

Thank you to everyone who sponsored them …every penny is very much appreciated.  I want to give an extra mention to everyone at Stephenson’s Catering Equipment for their kindness and generosity.  

We have a couple of sponsored events coming up in the next few weeks …

Peak District 58 mile mountain bike challenge 

Adam, Connor, Gleaves, Carl and Johnny are in training for this gruelling challenge and we have started to receive sponsorship funds already!  They have had to postpone their original plan to do this on Saturday and we will have a new date very soon.

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Wilmslow Festive 10K

Jess, Jake, Callum and Niamh will be taking part in this event on Sunday 25th November.  Training has begun and I hope to be there to cheer them on, on the day.

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Dry November

My wonderful work friend Julie is planning a dry November and will be collecting sponsorship money for doing so.  Julie’s preparation involves spending the half term holidays drinking a month’s worth of Prosecco! 

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If you would like to sponsor any of the superstars mentioned above, you can do so at the Go Fund Me page linked below or by speaking to them in person.  

Thank you to everyone for your continued support, whether by taking part, by donating or by sharing my story ?

GoFundMe

19 First £1000

Well today has been a rather emotional day for me and my family.  We launched our fundraiser just a few days ago, very unsure of how it would fare and mostly hoping not to offend anyone because we are asking for money …today we reached our first £1000!!

By the wonders of technology, I heard about this through a WhatsApp from my sister in Germany (I love how technology helps us to stay in touch with loved ones who are many miles away!), so quickly checked the GoFundMe page.  

Not long after this, the fund received a flurry of donations from various good people from Stephenson’s Catering Equipment.  Both my children work for Stephenson’s and they decided to share the appeal with their managers and colleagues – their generosity has really touched us …thank you everyone. 

Stephenson’s are worth checking out if you need any kitchen or catering equipment – they sell to members of the public as well as to bars and restaurants.  They are also taking steps to provide environmentally friendly products and have the biggest selection of paper straws I have ever seen! 

Click here for more …

In other news – no adverse reactions to my first shot of Rebif.  Fingers crossed for the next one on Thursday ??????

GoFundMe