MND Campaign

A Motor Neurone Disease awareness day was held across six schools on Friday as part of a campaign inspired by a hugely popular headteacher who has been diagnosed with the illness. 

 MESSAGES and symbols of love are everywhere you look in the little school that’s trying to come to terms with huge sadness. Orange and blue balloons, ribbons, cakes, posters, drawings, banners, decorations and handprints adorn playground fences, windows, corridors, walls, desks, and classroom doors at Hartburn Primary. And it’s all for Mrs Park.

The school, near Stockton, is bursting with the official colours of the Motor Neurone Disease Association, in an emotional demonstration of support for its beloved headteacher. Claire Park, head at the school for the past five years, was diagnosed with MND in June – and the Hartburn pupils, staff and parents want her to know she’s in their hearts.

They’ve been joined by five other schools in the Prince Regent Street Trust: Barley Fields Primary, at Ingleby Barwick; Kader Academy, at Middlesbrough; Oxbridge Lane Primary, at Stockton; Village Primary, at Thornaby; and Wolviston Primary. All the schools are showing their support in different ways, and today is the first in a series of MND awareness days as part of a trust-wide response to Claire’s devastating diagnosis.

The aim is to increase understanding of the disease, raise funds for research, and to build a legacy for someone the pupils describe as “the best and kindest headteacher”. “If she was here with me now, she would want everyone to know how grateful she is for the support – it’s been overwhelming,” says Claire’s husband, Matthew, who is visiting Hartburn Primary for the awareness day. As well as raising vital funds for national MND charities, including the MND Association, there’s an appeal by the Friends of Hartburn Primary to raise £50,000 to create a play area at the school that will be known as ‘Mrs Park’s Park’.

Claire, who is in her mid-40s, was finally diagnosed with MND in June after a year of misdiagnoses. The “living nightmare” began after she fell while dancing during a holiday with friends, in Ibiza, in July 2024. An ankle injury took time to heal, and she began having balance and gait issues. She had also injured her hand, and developed problems with her grip. Unusually, Claire, normally so resilient, also began to struggle emotionally – a common symptom of MND.

Frustrated with a lack of progress through the NHS, Claire and Matthew arranged a private consultation with a neurologist in London, and she was initially diagnosed with functional neurological disorder. However, she was also sent for a precautionary MRI scan on her brain and spine, leading to a doctor telephoning after a while to say the results showed “nothing of concern” and that she could pick up a copy of her results from her GP. To the couple’s horror, the detailed results showed there were signs of ALS, the most common form of MND. The diagnosis was confirmed the following week at James Cook University Hospital, in Middlesbrough.

“MND is the cruellest illness,” says Matthew. “All you can say is that today is better than tomorrow because it’s a progressive disease, slowly robbing Claire of everything. “The average life expectancy from the point of diagnosis is one to two years but it varies. Claire’s a very positive person and we try to make the most of every day, finding joy and making memories.” For example, Claire, Matthew and their two daughters, Evangeline, 15, and Emilia, 14, have recently returned from a motorhome tour of Europe and have just embarked on a precious holiday to Disneyland, in Florida.

Meanwhile, the schools in the trust are going to great heights to show how much they care. Mandy Lockwood, a teaching assistant at Hartburn, has  volunteered to skydive from 10,000 feet, at Shotton Airfield, to raise funds for Mrs Park’s Park. “I wanted to do something out of my comfort zone. It’s scary but I keep thinking it’s nothing compared to what Claire’s going through,” says Mandy, apologising for having to wipe away tears. To help with her fundraising, a colouring competition has been launched. For a minimum donation of £1, the children get to colour a picture of Mandy with a parachute.

Claire’s best friend, Gill Ball, previously assistant head at Village Primary when Claire was headteacher before she moved to Hartburn, is organising “Hikes for Claire”. It’s a series of fundraising walks that have so far raised £13,000. “The walks have given me and my family a sense of purpose in a situation that feels very out of control,” says Gill.

“It’s the little, day-to-day things that affect Claire most. She’s fiercely independent and hates having to rely on others. “She was really happy the other day because she’d managed to clear out the cutlery drawer on her own. “But she’s such a selfless person, her biggest concern is for the impact it’s having on those close to her. She’ll often say ‘there’s always someone worse off ‘– that’s what makes her so special.”

Jill Ellison, Chair of the Friends of Hartburn Primary, is leading the fundraising campaign to create Mrs Park’s Park. “Claire had always wanted to resurface part of the playground and create a friendship area for the children,” she recalls. “We decided to launch the appeal for Mrs Park’s Park on the day she was diagnosed. When we emailed to tell her, she sent a message back, in true Claire style, saying: “That’s a gorgeous idea.”

For Julia Armstrong, CEO of Prince Regent Street Trust, the positive response to Claire’s illness is a justifiable source of pride. “We are all heartbroken because Claire is an amazing person who has touched a lot of hearts. It’s been a shock and deeply affected us, but it’s so heartwarming to see how staff, parents and pupils have pulled together.”

The MND awareness day has been a difficult lesson for children so young, but it’s clear they understand its importance. Grace Butterworth, one of the Head’s Ambassadors at Hartburn Primary, speaks for them all when she says: “Mrs Park is a really wonderful headteacher, and we need to help people like her with this terrible disease. Hopefully, there’ll be a cure one day.”