2 days ago
Alice & Stephen
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Great effort walking the Extra Mile!!
2 days ago
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Great effort walking the Extra Mile!!
2 weeks ago
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3 weeks ago
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3 weeks ago
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1 month ago
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Amazing!
1 month ago
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1 month ago
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1 month ago
From all at Isis Cricket Club
1 month ago
From all at Isis Cricket Club
Event dates: 8th June 2024 – 15th June 2024
Luke Hames-Brown is raising money for My Name'5 Doddie Foundation and Motor Neurone Disease Association
Hi,
Thanks for taking the time to visit my charity fundraising page.
In April 2023, at the age of 34, I was diagnosed with Motor Neurone Disease (MND, also known as ALS), a life limiting, degenerative neurological disease with an average life expectancy of 30 months from the onset of symptoms. I first developed symptoms in early 2022 with weakness in my leg. Since this time the weakness in my muscles has gradually progressed with more muscles becoming affected.
Receiving this diagnosis was utterly devastating, particularly coming 10 months after my incredible wife Kate and I were married, and when Kate was 4 weeks pregnant.
When first told MND was a possibility I said that even if I were not diagnosed I wanted to do something to fundraise, to try and help make sure others in the future do not have to feel the fear and loss myself, Kate and our families experienced.
Over the months since diagnosis this has developed other meanings; I have come to a realisation that whilst a major diagnosis or life event like this will inevitably be a defining, dominating feature of my life, I do have control of how I let that definition occur.
I am making an active choice to use the time I have to create memories for myself and those I love and care for.
I believe that I can, and should, keep doing the things I love for as long as I can. I might not be able to do them in the same way I used to, but with adaptation and changing my approach I can still be involved in so much.
I have always loved walking, and have a background of 10 years as a doctor in volunteer Search and Rescue. I have wanted to walk Hadrian's Wall for many years and being diagnosed with MND has motivated that I should use this as an opportunity to raise awareness.
I will walk the 84 miles from the West to East coast of Britain over 8 days from 8th-15th June 2024.
I hope to raise money to further research into MND and help support those affected by the disease, and also hope that perhaps people out there who are struggling with difficult moments or news in life might see my undertaking this challenge and believe that you can build memories and experiences, even facing adversity.
I am fundraising for two fantastic charities, the My Name'5 Doddie Foundation have a clear vision of a world free of MND. The charity was established by rugby player Doddie Weir and the trustees in November 2017 following Doddie’s diagnosis. It was founded in response to his frustration at the lack of options available for MND patients – no effective treatment, limited access to meaningful clinical trials and what can feel like no hope.
The aims of the Foundation are simple:
- To raise funds to aid research into the causes of MND and investigate potential cures.
- To make grants to individuals suffering from MND, to enable them to live as fulfilled a life as possible.
I will also donate 10% of the money raised to the Motor Neurone Disease Association. MNDA are a national charity in England, Wales and Northern Ireland focused on improving access to care, research and campaigning for those affected by MND.
My wife and a wonderful support team of family and close friends will be walking the 84 miles with me. In October last year our son Rowan was stillborn at 31 weeks, we had excellent care at the John Radcliffe Hospital in Oxford and have since been very grateful to be supported by the charity Petals.
Kate has a separate JustGiving page to raise funds for Petals, please take a look and donate if you can:
Thank you so much,
Luke
Thank you for checking out my page. Making a donation is fast, easy and secure thanks to Give as you Live Donate. They'll take your donation and pass it onto My Name'5 Doddie Foundation and Motor Neurone Disease Association.
4 months ago
It’s been a little while since I’ve posted, and as expected I’ve had a few ups and downs with a bit of post challenge blues at times.
I wanted to put this post up to make what I think is a really important point, life when you’re dealing with a diagnosis like MND can be really hard and there are times when you feel like you just can’t smile or laugh.
However, I think it’s really important to do things to make yourself laugh and smile and enjoy life where you still can. A few weeks ago, our amazing friend Amy took us to see the wonderful Siegfried und Joy in London. We cried, but with laughter, they are absolutely amazing and I can’t recommend them enough.
laughing and enjoying something truly joyful is something we can all do and has such a positive impact. I felt so good after that trip and I am making sure to embrace all the positivity I have in life.
5 months ago
Walking Hadrian’s wall took help in lots of different different forms.
I’d like to say huge thank you to the people who helped us make this challenge happen by helping with sponsorship, poster printing, kit and food to keep us going.
Swan Family Centres swanfamily.org.uk
@peenergyltd
@theartfulgrocerswadhurst
@harvey_lloyd_screens
Tesco Hastings
Hunters BnB Bowness-on-Solway
Ticehurst Pharmacy
5 months ago
It’s just over a week on from finishing the challenge and I’ve had some rest and feeling well recovered.
It’s been a balance between wanting to completely crash out after the intensity of the challenge and keeping myself moving so I don’t stiffen up too much.
I want to take this opportunity to say thank you to my brother-in-law @thomas_hames13 who was medic for the challenge. he kept me another strapped up each day and was always keeping an eye on everyone during the walk. Not to mention getting me back on my feet after my big fall and motivating me to keep going the whole way. Tom is so supportive and in my book, a bit of a legend!
I also want to say a big thank you to Hardik from Ticehurst pharmacy who provided the medical kits and equipment.
5 months ago
Today is global MND awareness day; The fact that we have a day like this gives me mixed emotions.
It’s fantastic that we have a day like this because the more awareness that we can bring to this condition , the more we can get people to understand it, think about it, care about it and inspire people to research it, the closer we will get to a cure.
But it’s also hard that we need to have a day like this , because it means we aren’t there yet and that there’s still more to do.
A diagnosis of MND is devastating , it dominates not only your life but also the life of the people you care about and who care about you. I know that life is going to be incredibly challenging., there are times when it already is, however, I am determined for myself and others to define the narrative of my life with MND.
The hard times and the happiness aren’t mutually exclusive , I know that the hard times are going to be really hard, but that makes me determined to live every moment of the happy times.
I hope that people read this and the other incredible inspiring messages I’ve seen today and pass them on to other people, to talk about MND, talk about the messages bravely written, their stories, their experiences and the need for us to come together to support people affected by MND and support research to find a cure.
My donation page is still live, please donate if you can and share far and wide, all donations will go towards research and helping those affected by MND.
Thanks everyone
Luke
5 months ago
My interview with BBC Radio Oxford, go to 1hr40 to listen:
bbc.co.uk/sounds/play/p0hzqxw8?partner=uk.co.bbc&origin=share-mobile
Your donations will help the great work My Name'5 Doddie Foundation and Motor Neurone Disease Association do.
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