Macclesfield community to come together at BBQ motor neurone disease fundraiser

By Alex Greensmith

11th Apr 2024 | Local News

Karen with partner Spence, outside Priory Park, the home of Macclesfield Rugby Club. (Image - Macclesfield Nub News)
Karen with partner Spence, outside Priory Park, the home of Macclesfield Rugby Club. (Image - Macclesfield Nub News)

A Macclesfield woman wants to raise thousands of pounds this year for the Motor Neurone Disease Association, by adding a day of family fun to Macclesfield's summer events calendar.

On Saturday, June 22, from 12pm to 4pm, Macclesfield Rugby Club will host the inaugural Big MND BBQ, an event aimed at raising awareness and vital funds for the Motor Neurone Disease Association.

Organised by Karen Sivewright, a former contestant on series one of Deal or No Deal, this event promises to bring the community together for a noble cause.

Inspired by her encounter with Brad Wale, who has Motor Neurone Disease (MND) and was also on Karen's series of Deal or No Deal, Karen Sivewright felt compelled to take action.

Witnessing the challenges faced by Brad and others living with or affected by MND, she envisioned an event that would not only raise funds but also shed light on the condition. And she hopes for it to become an annual event!

Last November, Karen appeared on 'Deal or No Deal', and met a contestant which inspired her to start the fundraiser for the Motor Neurone Disease Association. (Image - ITV)

"The Big MND BBQ is a chance to bring the community together to raise awareness of Motor Neurone Disease and raise funds for the Motor Neurone Disease Association," said Karen Sivewright.

"With the possibility of the fundraising initiative being nationalised, we could be at the start of something incredible.

"The Big MND BBQ idea might be similar to planting an acorn, with everyone's support making the difference in how big the oak tree grows."

The event will feature a delightful, traditional BBQ spread, live music, family-friendly activities, and opportunities to learn more about MND and how to support those affected by it.

All proceeds from the event will go directly to the Motor Neurone Disease Association, supporting their vital work in research, care, and advocacy.

The disease occurs as messages from the motor neurones gradually stop reaching the muscles. This makes the muscles weaken, stiffen and waste, which can affect how you talk, walk, eat, drink and even breathe.

The life-shortening illness has no cure, but symptoms can be alleviated to improve quality of life, and funds are always going towards its research.

According to the Motor Neurone Disease Association, six people per day are diagnosed with MND in the UK. Six also perish from the disease every day.

There is a one in 300 risk of getting diagnosed with MND in your lifetime.

Richard Shackleford, regional fundraiser for the MND Association, said: "I am completely blown away by Karen and her efforts to raise funds for the Motor Neurone Disease (MND) Association."

Motor neurone disease is also known as ALS disease in the United States, and gained notoriety in 2014 with the viral trend called the 'ice bucket challenge', which raised millions of pounds towards research. (Image - Nub News)

"She has done an incredible job with the planning, contacting sponsors and celebrities, arranging over 350 Rock Choir participants to be there, and the list goes on. 

"Karen is a tower of strength and enthusiasm and support like this ensures the MND Association is there for people affected by MND."

As well as organising this super-fundraiser, helping others is part of Karen's day job, as she works with autistic children.

"It feels amazing to bring a fun new event to the Macclesfield summer calendar," said Karen. 

"I am super excited to have the opportunity to bring the community together, for such a worthy cause. 

THE SUPER-VOLUNTEERS: Karen has rallied the community to assemble an Avengers-style line-up of committee members to bring this June's event to fruition. (Image - Macclesfield Nub News)

"I would like to share million thank yous. Every person that I have connected with about this event, has offered to help. 

"Businesses can support by sponsoring the event. Supermarkets have been a great help so far.

"We do need certain things we don't have at the moment, we may need extras like more tables.

"We need face painting, and more gazebos and cover for the event. 

"Please get in touch to see if you can offer things that you might need."

Children under four go free, to what promises to be a fun-filled day out. (Image - Macclesfield Nub News)

Local businesses that have got involved so far include Spiral, The Entertainer in the Grosvenor Centre, Hotscamp of Fence Avenue, and Forest Distillery

Above all, Macclesfield Rugby Club have been a huge help so far. Rugby diehard fans may know the story of Rob Burrow, an ex-pro now living with motor neurone disease.

Rock Choir, a renowned vocal group, has expressed their support for the event. "The Big MND BBQ exemplifies the power of community coming together for a meaningful cause," remarked a representative from Rock Choir.

"We are honoured to stand behind this initiative and encourage everyone to join in for a day of unity and support.

The Big MND BBQ aims to not only raise funds but also to foster a sense of solidarity among attendees.

By participating in this event, individuals can make a tangible difference in the lives of those affected by MND while enjoying a day of camaraderie and support.

Tickets are available from this link, plus additional donations can be made HERE.

If you can't wait until June 22, you can follow the Big MND BBQ on Facebook.

The MND Association is a cause that is close to Macclesfield Nub News' heart, with their staff member having done a fundraiser for the charity earlier in the year.

For more information about what the funds raised could pay for, please head to the MND Association's website.

The event will take place at Macclesfield RUFC on Priory Lane, on June 22. (Image - Macclesfield Nub News)

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