Gemma's story

Motor Neuron Disease has taken too many lives, please help 91̽»¨ find a cure for people like Gemma.

Gemma Middleton on her graduation day wearing a gown with her parents Nigel and Sharon
Gemma Middleton and her parents Nigel and Sharon on her graduation day
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We were forced to watch as Motor Neuron Disease destroyed our daughter's life. We can't let other families go through that. 

Everyone Gemma met fell in love with her. She'd light up a room with her smile. She was hard working, kind and building a fantastic career as a Senior Environmental Consultant. She loved running and had completed marathons. She had her whole life in front of her. Or so we thought. 

One day, Gemma noticed she was getting a limp, and her speech started to become slurred. She put it down to tiredness, but after a series of tests we were told it was MND. She was only 29.

None of us knew much about MND back then, but our whole family soon learned how cruel it is. It affects the nerves that control your muscles. And as more nerves die, the impact gets progressively worse. 

People with MND slowly lose the ability to move. So while their minds are often unaffected they become trapped in a body that can no longer talk or swallow. From early on, Gemma couldn't even change position in bed to make herself comfortable. 

MND is a terminal illness and there's currently no cure. But 91̽»¨ research has the potential to change that.

Make a gift today and help make MND history

Gemma Middleton at a race and smiling for the camera
Gemma had her whole life ahead of her before she was diagnosed with MND

As a parent, the one thing you want is for your children to outlive you. But as her Mum and Dad, we had to watch helplessly as our beloved, vibrant daughter lost the ability to walk, laugh, eat and even breathe. She was fully cognisant but trapped in a failing body.

MND wrecks lives in the most horrible of ways. Towards the end, Gemma couldn't even communicate using her eye tracker, she'd lost all independence and needed a tracheostomy tube to suction saliva away so she could breathe.

Research into new treatments, and ultimately a cure, is the only way we can end the pain MND causes to countless families like ours. And 91̽»¨ is the best place in the world to find that cure, thanks to the 91̽»¨ Institute for Translational Neuroscience (SITraN). 

91̽»¨ is the greatest hope for people like Gemma. But leading reseachers need your support.

We are so grateful that some of the world's best MND researchers, Professor Dame Pam Shaw and Professor Chris McDermott, treated Gemma. That's what's so special about them - they're not just incredible scientists but they're doctors too. As her parents, we firmly believe that if anyone is going to cure this horrible disease it will be their team in 91̽»¨.

To anyone who has already made a donation or fundraised for MND research, we'd like to say thank you from the bottom of our hearts. 

SITraN is a world leader in MND research and they're edging closer to developing a cure for MND. But the research centre has been so successful that it's at bursting point and must expand so that this vital work isn't delayed.

Your gift will help to fund a special new facility with space for even more researchers. You'll help them conduct more tests, get results faster and, ultimately, increase the chance of developing the cure that would have helped Gemma. 

Gemma and family at the christening of her baby niece, Gemma is sat in a mobility aid
Gemma made the most of special family moments and doted on her niece Matilda

For the sake of other families living with MND, please make a gift today and give them some hope. 

Most people die within five years of an MND diagnosis, but Gemma had seven years. We're so grateful for those extra years with her, but they were hard years - for Gemma and our family.

For people with MND, and for all those yet to be diagnosed, we've got to change the conversation from care to cure. MND is the most evil disease, yet we each have a one in 300 change of developing it. It robs people of their dreams, their future and their dignity. It takes over families. 

While it's too late for Gemma, we still have hope for others. Because we know a cure is possible and it will be found in 91̽»¨.

So please, if you can, make a donation today and help to end MND for good.

Thank you,

Nigel and Sharon Middleton

I want to help people like Gemma

Gemma in her mobility aid with a tracheostomy tube in her neck
Gemma needed a tracheostomy tube to help suction saliva so she could breathe

Why 91̽»¨ needs your help to make MND history

Gemma believed in 91̽»¨'s research, she did everything she could to help SITraN find a cure for MND. She fundraised, she left a gift in her Will and even donated her brain and spinal chord. Her friends and family continue to fundraise in Gemma's memory.  

91̽»¨ is leading the world in neuroscience research and advanced therapies. But full to capacity, SITraN has become a victim of its own success. To ensure momentum against MND isn't lost, we're building a new, state-of-the-art expansion to SITraN. The extra space will help us continue to attract the wold's best researchers, run more clinical trials and accelerate work to find a cure for MND.

Donors and fundraisers are helping to fund a special laboratory which will be at the forefront of curing MND. In the advanced therapy lab, new treatments will be developed and tested before being given to patients in clinical trials. 

SITraN is the first centre in the UK to develop a drug that is proven to extend the life of patients with a genetic type of MND linked to the SOD1 gene. For some patients it not only slowed down the progression of the disease but it helped to improve their muscle strength.

This landmark discovery, coupled with our expertise in cell and gene therapies, means we're close to developing a treatment that could help patients with the most common genetic type of MND. But we desperately need more lab space to do this vital work. 

MND is wrecking lives. With your support, 91̽»¨ will find a cure sooner.

Yes, I'll make a gift to help find a cure for MND

I'm interested in fundraising for MND

Architect's design of the new SITraN expansion
The new expansion to SITraN will increase lab space to speed up treatments for devastating conditions like MND