The charity we’re supporting
The MND Association focuses on improving access to care, research, and campaigning for those living with or affected by MND in England, Wales, and Northern Ireland.
Registered Charity: RCN294354
Helpline: 0808 802 6262 (Mon-Fri, 9am-4pm)
Lancashire and South Cumbria MND Care Centre Based at Royal Preston Hospital, this centre is involved in national and international clinical trials, providing expert, compassionate, and multi-disciplinary care to patients and their families. Director: Professor Suresh Chhetri Coverage: 1.8 million people
Featured interview about our MND journey Media Joanna and Andrew shared their story with BBC Radio Lancashire, discussing the diagnosis, the challenges they face, and their determination to make precious memories together.
The charity we’re supporting
The MND Association focuses on improving access to care, research, and campaigning for those living with or affected by MND in England, Wales, and Northern Ireland.
Registered Charity: RCN294354
Helpline: 0808 802 6262 (Mon-Fri, 9am-4pm)
Lancashire and South Cumbria MND Care Centre Based at Royal Preston Hospital, this centre is involved in national and international clinical trials, providing expert, compassionate, and multi-disciplinary care to patients and their families. Director: Professor Suresh Chhetri Coverage: 1.8 million people
Featured interview about our MND journey
Media
Joanna and Andrew shared their story with BBC Radio Lancashire, discussing the diagnosis, the challenges they face, and their determination to make precious memories together.
Our mission is to accelerate the search for a cure for motor neuron disease (MND). We take the knowledge gained from people living with MND into the laboratory, transforming those insights into potential treatments and testing them in clinical trials.
The motor neurone diseases (or motor neuron diseases) (MND) are a group of neurological disorders that selectively affect motor neurones, the cells that control voluntary muscle activity including speaking, walking, breathing, swallowing and general movement of the body.
Last night, the Government announced a commitment to fast-tracking social care assessments for people with motor neurone disease (MND).
In a letter to Baroness Casey, who leads the Independent Commission on Adult Social Care, Secretary of State for Health and Social Care Wes Streeting promised to ‘take forward immediate work to develop a fast-track process, or ‘passport’, that speeds up assessments and access to care for people diagnosed with MND’.
This should mean an end to the current situation where many people with MND are forced to wait far too long to access social care, leaving them living in unsafe conditions and not able to make the most of every day.
This is brilliant news, which has the potential to make a huge difference to our community.
We’ve been working with the Casey Commission over the last few months, and are very grateful to Baroness Casey and her team for the commitment they’ve shown to understanding and addressing the challenges people affected by MND face with social care.
We’re also very grateful to Wes Streeting for responding so positively to Baroness Casey’s recommendation, and with a speed that reflects the fact that people with MND don’t have time to wait.
But above all, we’re incredibly grateful to the people affected by MND who shared their personal experiences of social care with the Casey Commission. To support the Commission’s research, we arranged a workshop for Commission members and people affected by MND. We got a strong sense that hearing from people who have had bad experiences of the system made a real impression on Commission members.
In fact, I don’t believe we would have got today’s news without it.
For me, this is a perfect example of what we, as the MND community, can achieve by working together.
We provided facts and figures and policy analysis, but nothing is as powerful as hearing directly from people about the impact the problems with the current system have on the lives of them and their loved ones.
So today is a day for celebrating what is an extraordinary win for the MND community. Our focus now needs to turn to implementation. Having shown impressive speed in committing to this change, we’re asking the Government to now show the same urgency in making it a reality. The faster it does this, the fewer people with MND will have to endure unacceptable delays in accessing social care.
We will, of course, do everything we can to support the Government in this, and will update you on progress.
My name is Stacey, and I am a Relationship Fundraiser for the MND Association, covering Manchester, Lancashire, and South & West Yorkshire.
My role is to support the incredible individuals and organisations who want to fundraise for our wonderful cause. I help them make a difference by offering guidance, advice, and practical materials.
My “why” is very personal. It began over 21 years ago when I lost my beautiful mum to Motor Neurone Disease. Ironically, this was where my journey started.
At that time, I was an estate agent with a two-year-old and a three-week-old baby. I knew immediately that I wanted to give back, help others, and make a difference. I wanted my mum’s legacy to reflect all the wonderful things she taught me in life, so I began fundraising in her name for the charity that supported us throughout her diagnosis and following her death — the Motor Neurone Disease Association.
Five years, countless challenges, fundraising events, and a lot of healing later… BOOM! I had found my calling. Fundraising.
I loved it.
I decided to leave the property market and pursue it as a career, joining the amazing Reuben’s Retreat as Senior Fundraiser, and later becoming Head of Income & Generation.
My life became immersed in purpose, kindness, and the generosity of those who give, do, and care. I could not have been happier in my new vocation.
Fast forward another six years, with an abundance of experience and a wealth of knowledge thanks to the magnificent Reuben’s Retreat, I was successful in securing a role with the charity I had always dreamed of working for.
In March 2025, I started my role as Relationship Fundraiser with the Motor Neurone Disease Association, supporting people like my mum and families like ours. I couldn’t be prouder.
The power of people will never cease to amaze me. I am forever grateful for the hearts and souls who remind me daily that I truly have the best job in the world. I feel beyond lucky to be able to walk with my mum in spirit every day while supporting incredible individuals who fundraise for those living with and affected by MND.
I am here to help anyone who wishes to raise funds and awareness for our MND community and to ensure that, for those with MND, every day truly matters.
I first met Andrew and Joanna through our Central & East Lancashire group, which supports people living with and affected by MND locally. I was immediately inspired by their positivity and energy. It is now my role to support them with any fundraising they choose to do for the MND Association.
They are a wonderful example of hope for others navigating challenging times.
To every individual and organization who has supported us—thank you from the bottom of our hearts. Your generosity means the world to us and helps fund vital MND research and support services.