Lets all rally around to support families facing MND this winter.
Pat was diagnosed with MND in 2024. Her daughter Karen and 10 year old grandson live with her in a busy home filled with three generations. They are incredibly close and face every challenge together.
This time of year, with it's many festivities, can be particularly challenging for families like theirs who are affected by MND. That's why we need your help. It's people like you who make many of our services possible. Together, we can rally around anyone who reaches out for support.
"My son, has really been at the heart of all our concerns, since he sees everything first-hand with my mum living here. Everyone's been so thoughtful about making sure he’s doing okay. Living with her just means there’s no sudden surprise or shock for him. He’s seeing everything unfold gradually. Theo asked if nanny was going to get better. We had to say, ‘no, she’s not going to get better."
When Pat received her MND diagnosis the whole family were devastated. Karen said she felt helpless because she couldn't make it better. But there was something she could do, she picked up the phone and made that first call.
"The upset turned to strength. I thought, ‘I can't sit and be sad, I can't fix it, but what can I do to make it better?’ It was important to me we were prepared because you don't know how or how quickly MND is going to progress. So I rang the MND Association's helpline, MND Connect. Through their advice we were able to get things ready. They really, really helped us be pragmatic."
Can you help make sure no one faces MND alone?
The support that's helped Karen's family
It’s generous people like you who make many of our services possible. By giving this winter, you can help make sure more individuals and families get the vital support and advice they need, when they need it.
The moment Karen realised her mum had MND, she contacted our MND Connect helpline. The information pack we sent Karen helped her plan her family’s next steps, from organising carers to installing a stairlift. As Karen says, “Because of MND Connect, we were able to start getting everything ready.”
MND Connect is here for everyone – people living with MND, family members, carers, health and social care professionals, and anyone affected
by MND. The team is dedicated to providing both emotional and practical support, including signposting to vital social and medical services. For Karen’s family, advice from MND Connect was key to helping them arrange the right care and equipment for Pat.
The Children and Young People’s service
Karen was so worried how her 10-year-old son, Theo, would react to the news about his nan. Laura from our Children and Young People’s Team
helped by reaching out to his school to arrange support. “Thanks to Laura, the teacher checks in with him during breaks, and keeps a book about MND on hand to answer his questions.”
MND can be tough to talk about, and for children and young people it can be particularly traumatic – especially when a close member of their family has been diagnosed. At the Children and Young People’s service, we work to help young members of the family understand what’s going on. Our specialist team use clear, honest and empathetic language to gently prepare children like Theo for the future.
When Pat needed a special chair and then a wheelchair, we were there to help. “That took a huge load off our minds,” Karen says. And when Pat
mentioned at her MND support group that she needed some essentials, we helped her apply for a grant to help with living costs.
Facing MND can be a huge emotional challenge. But it’s also a practical and financial one, with many families urgently needing equipment and resources that are beyond their means. We support thousands of families like Karen’s by providing financial grants. Whether it’s a care grant, support with the cost of living, or funding towards vital equipment like a wheelchair or a hoist, we’re determined that no family facing MND should experience financial hardship.
MND support groups and local support
Living with MND can be lonely and isolating – not only for those who have been diagnosed, but for loved ones and friends who often feel anxious,
frustrated and powerless to help. MND support groups provide warm, welcoming communities where everyone affected by the disease can meet, share experiences and advice, and access vital information. As Karen says of her mum and dad’s group, “When you’re there, you relate to everybody. It’s like a big hug.”
As Karen’s story shows, the MND Association supports entire families in many different ways. It’s more than a collection of vital services – it’s a community that comes together to support people with warmth, love, and a determination that no one should face MND alone.
Find out more about the MND Association services featured in our appeal by clicking the images below.
As a thank you to everyone who has rallied around his family, Theo has decorated our special rallying around bauble. If you'd like to get involved you can download your own bauble to decorate too!
£50
A gift of £50 can help our MND Connect helpline team be there to answer the next call.