The Motor Neurone Disease Association (MNDA) is a Charity close to my heart because it directly affects my Family!

In October 2017, my Grandpa was diagnosed with MND, there are a few different pathways of it and he has Progressive Muscular Atrophy. We as a family had never experienced anything like this before and weren't sure what to expect, which can be quite daunting especially for him as he is an active man with a background in engineering, so for him fine motor skills is something he's always been great with but this is something that is greatly affected by this Disease.

Since his diagnosis his mobility and stability has slowly declined over the years compared to what it used to be but with the aid of a stick/walker he is lucky enough to be in a position where daily tasks can still be managed and its just become part of the 'norm', with this in mind, he is aware that doing anything remotely strenuous is going to leave him tired and achy for the next couple of days (not that that ever stops him!). As a family we joke about the literal wobbles he has and how he turns a stumble into a dance move at the family BBQs' but other times it is clear to see the frustration it causes. My Grandma has been helping to care for him since the diagnosis, giving some physical support for example when he looses his balance slightly, and mostly being there for emotional and mental support. This condition is difficult to understand and as there is currently no cure it can be exhausting for both those who are diagnosed and their carers. I have watched both of my Grandparents support each other over the years, and they are an inspiration to myself and many others. The way they deal with things in my opinion is incredible and the way they show their strength both individually and as a team is something to be recognised, alongside this, they are not afraid to show vulnerability and they count themselves lucky every day to have a family that will support them at the drop of a hat <3

After his diagnosis, my Grandpa became a member of 'Motor Neurone Disease Association - Yorkshire Coast Group’' (all funds raised via this page will be donated to this group). They provide social meetings once a month where group members can discuss individually their experience of living with this condition and give each other advice and support. These meetings also give carers the chance to chat to each other and unwind whilst knowing their loved one is being supported also. These meetings have been described by my Grandparents as "uplifting and very light hearted" and sometimes they also listen to a speaker. Throughout the pandemic this support continued virtually using Zoom and having this connection has been more beneficial than ever before!

There are members of the group who choose to fundraise which benefits individuals when they require more help/support. This can include grants towards equipment such as stairlifts, rise and recline chairs and walking aids. Financial grants can also be made for respite care for both people with the condition and their carers. 

This year I signed up to the 'Kilimanjaro - long way round' Trek lead by Evertrek UK. This is a self funded trip which I have chosen to do for personal reasons and decided it was a good way to raise money for this Charity. I am grateful everyday that my body is able to do what it is and feel like we need to take more notice of our ability to move and challenge ourselves. A condition like this comes without warning a lot of the time and many who are diagnosed rapidly decline leaving physical challenges like this as potentially unachievable. So I am choosing to take advantage of the fact that I am able to do it and am doing it on behalf of those who unfortunately can't at this time. 

Below is some information taken from MNDA on how your donations can help:

£10 - provides an information pack to a newly diagnosed person with MND

£75 - funds an MND researcher for half a day

£300 - provides basic level respite care for one day

£550- could fund a tablet device with communication software, giving the ability to communicate with loved ones 

£1000 - will pay for detailed analysis of the DNA of someone with MND to help better understand the causes of the disease

£2000 - could fund MRI scans for 5 study participants, helping researchers better understand MND

£4000 - could fund a person with MND to participate in a clinical trial for a year 

I am aiming for a minimum of £1000 for this Charity, as you can see any donations are gratefully received (please don't forget about gift aid!) and can make a huge impact towards giving people their independence back to live their daily lives as well as aiding research towards finding a potential cure. 

Thanks for reading and spread the word!

Aimie