26 + 27.05.23 Bucket Collection at Caernarfon Tesco

On two lovely sunny days we held a bucket collection at Caernarfon Tesco store where we raised £727.67 to help people living with MND in our area. We would like to thank the customers very much for their generosity, and also the store's staff for being so helpful. As always, a big thank you to our wonderful volunteers. Thanks also to the HSBC staff who came to help us; we could never have manned the two days without you.

Click here to see more photos of the Bucket Collection at Caernarfon Tesco.

02.12.22 Bucket Collection at Bangor Tesco

Our little committee was stretched to its limits on Friday 25th and Saturday 26th of November when we had our bucket collection at the Tesco Store at Bangor. We were very fortunate indeed to have the help of local HSBC staff thus enabling us to collect donations for the whole of the 2-day event. If you can spare a couple of hours now and again to help, please get in touch - jen@mndnorthwestwales.org
The total collected over the two days was £1,209.07, and this money will go to help people living with MND in our area. Thank you to Tesco, HSBC and everyone who donated.
Click here to see more photos of the bucket collection.

20.10.22 FACTOR-MND Research Study

We would like to invite you to take part in the FACTOR-MND research study. This study investigates how the experience of being a family carer for someone living with MND impacts the carer’s own wellbeing. Our results will help inform current MND services, and future carer support services.

Current MND carers are invited to complete an online survey at https://uea.onlinesurveys.ac.uk/factor-mnd. If you prefer a pen and paper version of the survey, please contact Polly Trucco (see contact details below). We are really pleased to share that 61 family carers have completed the FACTOR-MND survey to date. Our target is 92 carers, and we will be recruiting family carers until the end of this year. If you are interested in taking part and sharing your experiences, we would love to hear from you.

We are also inviting current carers to participate in an online or face-to face interview about their experiences of caring for the person they support, and how they are coping with everyday changes. If you wish to take part in this interview study, please contact Polly Trucco for further information. Carers who took part have said that “it was lovely to talk about these experiences, I’ve been heard, and we need support in this area”.

Contact details: Polly Trucco mnd.research@uea.ac.uk (+44) 07825863389 @FactorMND
A huge thank you to all the people who have already taken part in FACTOR-MND!

20.08.22 Bucket Collections Resume After Covid

On Friday August 19th and Saturday August 20th we were able to have our first Bucket Collections since Covid. This was also the first time we have used our new Card Reader, which came in useful as many people do not carry cash now. Thank you to our faithful volunteers and to the lovely customers at Tesco, Porthmadog who donated. The total collected over the two days was £978.20!
Click here to see more photos.

09.08.22 Family To Climb 47 peaks In Snowdonia In Just Five Days!

Keta Hansen was just 47 when she died from Motor Neurone Disease. Now her husband and two daughters are embarking on an epic five-day challenge to climb 47 peaks in Snowdonia – one for each year of her life. Kevin, Hebe and Violet have been raising money for the Motor Neurone Disease Association for the last seven years and are hoping Keta’s Journey – The 47 Peaks will add significantly to the £250,000 total they have raised so far. They start on the 18th August, so keep an eye out for them.

https://www.justgiving.com/fundraising/streethansenfamily

03.08.22 Survey Into Impact Of Cost Of Living Rise

The current cost of living crisis is a real concern for many people, especially for those living with neurological conditions such as MND.

The MND Association, in collaboration with the Wales Neuro Alliance, want to understand your views and experiences so that we can be best placed to advocate on your behalf when meeting with politicians and decision makers, in the autumn, to raise concerns about the impact of the cost of living on people living with neurological conditions and to call for action from the Welsh Government.

With this in mind, we are asking you to spare 5 minutes of your time to answer this short survey. The survey is anonymous, and a report will be developed and shared with you after the summer.

The significant financial costs that come with living with MND can take the form of loss of earnings for the person living with the condition and for their carer. There are costs of buying equipment, mobility aids and carrying out home adaptations and there can be additional costs for help with personal care, cleaning, and childcare. People with MND may also need more heating to stay comfortable and avoid heightened pain, extra electricity to charge assistive technology devices and petrol to get about due to limited transport options.

Furthermore, welfare reforms are compounding poverty and isolation for many within the neurological community. Having a neurological condition is hard enough – it is being made even more difficult by a complex benefits system.

Thank you for your time and support – it is very much appreciated.
Impact of cost of living survey - Wales Neuro Alliance and MND Association click here

20.06.22 Walk to D'feet MND

On Saturday, June 18th a Walk to D'feet MND was held along Llandudno promenade to raise awareness and money for Motor Neurone Disease. It was so nice to see everyone walking along in their blue and orange t-shirts! Thank you to everyone who supported us by walking and by sponsoring.
Click here to see more photos of the day

16.06.22 Global Motor Neurone Disease Awareness Day on Tuesday 21st June

Global MND Awareness Day is on the 21st of June and the MND Association in Wales are meeting with Peter Fox, our champion of MND, on the steps of the Senedd between 12.00-13.15pm. Peter will be accompanied by MS’s from across all parties to also show their support.

We are aiming to raise awareness of the challenges faced by those who are living with and affected by MND in Wales, highlighting the need to improve access to services, care and research in Wales.

If you are in and around Cardiff, come and join us and members of the Senedd to raise awareness of MND in Wales. If not, keep an eye out on social media to see what we get up to.

If you are able to join us, or would like some more information, please contact Millie via email: millie.jenkins@mndassociation.org or via phone: 01604611790.

13.06.22 Remembering Roger

The family of the late Roger Sowersby would like to invite you to a celebration of his life to be held at The Split Willow, Llanfairfechan on Saturday 16th July at 2pm. We know how much he valued his home, friends and colleagues and it is at his instigation and request that we are organising this event. We look forward to seeing and meeting as many of you who are able to attend as possible.

07.03.22 Raising Money On The Fastest Zip Line In The World!

On March 1st, brother and sister Robert and Michelle Oldham travelled at speeds of over 100 mph on the zip wire at Penrhyn Quarry. Their aim was to raise money as their father, Barry Oldham, is living with MND. Michelle had travelled from the Isle of Man, and Robert had journeyed from Stockport to take part in the challenge which raised £700 for MND. Well done!

01.03.22 SAVE THE DATE! WALK TO D'FEET MND ON JUNE 18th 2022

Come together with friends and family (children and pets welcome!) for a 2.4 miles wheelchair friendly walk to raise awareness and money for Motor Neuron Disease along Llandudno Promenade. Registration from 10:30am and walk begins at 11am.
More information available from Rachel Ritchie fundraisingmndnewales@gmail.com

Click here for more information

Sponsorship form - click here

24.01.22 Share Your Stories

This is a good opportunity for people affected by MND to join an online virtual meeting to share their stories and experience of accessing care at The Walton Centre. There are 2 date options for people to join, either the morning of Tuesday 8th February or the evening of Thursday 10th February. The details for booking a place and joining are on the poster – click here to read more about the virtual Healthwatch meeting

05.09.21 Running In The Leeds Half Marathon To Raise Funds

This morning Shaun Holdsworth, Aled Roberts, Euros Rees and Harry Layton ran in the Leeds Half Marathon to raise money for the MND Association. They have raised over £3000 and there is still some money to come in. Wonderful! Every pound makes a difference, and this will help to improve care and support for people with MND, their families and carers, as well as helping fund and promote research. Thank you very much.

16.03.21 Support By Association Visitor During Lockdown

Lynwen Griffith is a Community Nurse living in Pwllheli. Lynwen was caring for someone with MND in her role as a Community Nurse and was looking for some support for them. There weren’t any Association Visitors in her area at the time so the MND Association asked her if she would like to volunteer as one, especially as there was a scarcity of Welsh speaking AV's. Throughout lockdown, Lynwen has continued with her voluntary AV duties, supporting four people by calling or texting. Thank you Lynwen.

19.02.21 Participants Wanted For Research Study

This is a study into changes in thinking and language in Motor Neurone Disease (MND) and requires people with MND and people who do not have MND.
This research focuses on the way that someone with MND may experience changes to their thinking and behaviour. They are looking for people with MND (ALS specifically) and healthy controls to take part in the study where they would be completing some tasks via Skype/Zoom (no in-person, face-to-face meeting). Anyone who takes part will receive a thank-you shopping voucher (value of £30).
Can you help? Click here for more information.

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