About MND

MND is a disease which affects the motor neurons of the nervous system. It is life shortening and mostly progresses rapidly.

MND damages and attacks the nerves, meaning that messages being sent from the brain to the muscles no longer work.

MND affects people from all walks of life and in different ways.

Approximately 1,100 people are diagnosed with MND every year in the UK. Up to 5,000 adults in the UK are affected at any one time.

MND can lead to weakness in the muscles and eventually paralysis. Although it does not usually affect the senses. Unfortunately, 1/3 of people succumb to MND within a year and more than 1/2 within two years of diagnosis.

Early signs and symptoms may be very slight and can be easily managed:

  • Spontaneous twitching
  • Fatigue
  • Weight loss
  • Muscle cramp
  • Difficulties in speech and swallowing
  • Shortness of breath

MND isn't as rare as you may think. Did you know that 1 in 300 people are at risk of developing MND in their lifetime?
There is currently no cure for MND.

For more information, the following sites are useful:
https://www.mndassociation.org/about-mnd/ 
https://www.alsuntangled.com/ 

Advice For Patients and Families

MND is hugely challenging for both patients and loved ones and continuing to instil love, fun, and hope into one another’s lives makes an important difference:

Love

A huge part of life is love, the love of family and friends, the joy of spending time together doing whatever you love to do! And it is the love you give them as well as the love they give you. MND cannot take that from us, we have so much we can give to our family and friends: we can be strong for them too.

Fun

It is what life is all about, and it is part of what the Foundation is all about. We want to beat MND, we want to do it together, and we want to have a lot of fun along the way. Family and friends of those with MND often say they feel so powerless, but they are not. They can show their love and determination: they can join our fantastic fundraising community, and together we will walk, run, swim, climb, knit, sing, paint, bake, cycle towards that cure, and have a great time doing it.

Hope

MND does not get to call all the shots: we can give it a bumpy ride too. Our challenge is to use every opportunity to maintain our independence and our dignity, and limit MND’s impact on us living our lives. The power of positivity: we can adapt – there are gadgets to help with every kind of personal and physical care out there, and who does not love a gadget! And there is support, clinical care, therapeutic care (physiotherapy, massage etc), nursing care, funding and charity support. Seek it out, make use of it and live your life.

How We Can Help

The Foundation is committed to helping improve the lives of those affected by Motor Neuron Disease. We help to fund grants, giving considerable sums to our friends at MND Association and MND Scotland to administer to individuals and families living with MND. 

How We Will Do This 

We work in partnership with existing frontline care providers to ensure the holistic needs of patients and their families are understood and met. We do this through supporting our friends at MND Scotland and MND Association who conduct the due diligence and manage these grants on our behalf. To find out more about the grants and to apply, head to either MND Scotland or MND Association’s grant pages.

We initiate and encourage research to better understand the information and support needs of MND patients and their families.

We engage with patients through the provision of information about latest developments and the opportunity to shape research priorities clinical trials and rapidly translating results into clinical practice.

Helpful Resources

As part of our commitment to supporting MND patients and their families, we have created a patient support booklet which is designed to help and provide advice to those living with MND and their loved ones. It can be downloaded here.

We would also recommend listening to our Dodcast Series as these episodes contain a wealth of information and advice about MND, much of which has come from Doddie’s first-hand experiences of living with the disease.

Euansguide.com is the disabled access review site where disabled people, their family, friends and carers can find and share reviews on the accessibility of venues around the UK and beyond. The site is an invaluable tool for everything from planning a day out, to picking a last-minute place for coffee or lunch.

Social Media Support Groups

Social media can also be a great resource for asking questions and learning about other people’s experiences. Here’s a couple of Facebook groups that you may find helpful, which provide a supportive global community for those living with MND and their families:

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