Andy & Jordan set up MND Charity
You may or may not be aware of the disease, MND – Short for Motor Neurone Disease. BDL Site Manager Andy and his Fire Stopper brother Jordan, along with their family have set up their own fundraising charity in order to raise as much awareness and more funds to help support this terrible disease that takes so many lives and affects many families.
Andy and Jordan sadly lost their grandad Stephen to MND in September 2019. Stephen had been diagnosed with MND only a few months before he passed away.
What is MND?
MND, also known as amyotrophic lateral sclerosis (ALS), occurs when specialist nerve cells in the brain and spinal cord called motor neurones stop working properly. This is known as neurodegeneration. Motor neurones control important muscle activity, such as: gripping. Walking, Speaking and Swallowing.
As the condition progresses, people with MND will find some if not all of these activities difficult before they eventually become impossible.
How is MND diagnosed?
There is no single test to diagnose motor neurone disease and diagnosis is based mainly on the opinion of a brain and nervous system specialist (a neurologist). The diagnosis of motor neurone disease is usually clear to an experienced neurologist, but sometimes specialised tests are needed to rule out other conditions with similar features.
Who does MND affect?
Motor neurone disease is a rare condition that affects around two in every 100,000 people in the UK each year. There are about 5,000 people living with the condition in the UK at any one time.
The condition can affect adults of all ages, including teenagers, although this is extremely rare. It is usually diagnosed in people over 40, but most people with the condition first develop symptoms in their 60s. It affects slightly more men than women.
Can you treat MND?
There is currently no cure for motor neurone disease. Treatment aims to:
- make the person feel comfortable and have the best quality of life possible
- compensate for the progressive loss of bodily functions such as mobility, communication, swallowing and breathing
What about survival rates?
Motor neurone disease is a severely life-shortening condition for most people. Life expectancy for about half of those with the condition is three years from the start of symptoms. However, some people may live for up to 10 years, and in rarer circumstances even longer.
Living with motor neurone disease is extremely challenging and often a terrifying possibility before the diagnosis is made. However, it's not necessarily as bleak as people imagine.
The end of life for someone with motor neurone disease isn't usually distressing and is most often in their own home. In most cases, a person with the condition will die in their sleep as the end stage of gradual weakness in their breathing muscles. Although some people with the condition will have swallowing problems, they won't choke to death/
What is Andy & Jordan planning to do to help?
Pilks rugby players, Andy & Jordan are planning to tackle a number of fundraising activities in order to raise awareness and get the community involved in helping build their profile to secure help and more support for those suffering with MND.
"MND is something that is close to our hearts and with what is going on now with Rob Burrow's case and we play rugby ourselves" said Jordon, 22, who formerly played at Haresfinch. “We are going to be doing the Three Peaks Challenge and we are also selling jumpers and tops and all the money is going to the charity. When our granddad got diagnosed, he said he'd like to watch us play again and he came down to watch both of us.”
Stephen also left behind wife Janet and children Phil, dad of Jordon and Andrew; Colin; Kevin and Catherine Cooil.
Andy & Jordan have started their fundraising on social media, starting up an Instagram, Facebook and Twitter account in order to attract as much interest as possible. In the first week their Instagram already had over 300 followers which is a huge step in the right direction for the lads.
Jordan said, "I didn't think it would be going so big, we have sold 30 to 35 t-shirts & hoodies within the first few days”. The word has been spread far and wide, the pair even got recognised in Australia which is mind blowing!
"I have just been blown away and it means a lot, especially with the rugby lads, it shows what the rugby community is like." Said Jordan.
If you would like to get involved with their fundraising activities, please drop them a message on one of their socials listed below.
We want to wish them both, along with their families & supporters the absolute best in all they do to help this cause. We will be supporting them all the way and cannot wait to get involved with their work.
