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 - catherine.roberts@mndassociation.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.
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!
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.
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.
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
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
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.
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.
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!
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
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
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.
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.
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.
Margaret Morris of Llanfairfechan has sadly lost both her husband and her daughter to MND. By holding various activities she has managed to raise £1,008 for our group in their memory. In the photo she is with her granddaughters who are handing over the donation which will help MND sufferers in the North West of Wales.
Could you support someone suffering from MND? Could you call someone to see how they are doing? The work of an AV can be very rewarding as you will be able to support a person with MND and their families during immeasurably hard times. The support from the MND team is always at hand, being both sympathetic and supportive.
Please get in touch with our Area Support Coordinator for more information at MND Connect - 0808 802 6262 - mndconnect@mndassociation.org
Our thanks go to Alwynne Morris Jones and Caernarfon Golf Club for their fundraising . Mr Jones was club captain in 2019 and during this time £1025.60 was raised for our group during various fundraising events. We are very grateful for the support, and the money raised will help MND sufferers and their families in the area. Pictured is Mr and Mrs Jones presenting the money.
As part of the Welsh Parliament’s inquiry into the impact of Covid-19 on Health and Social Care in Wales, the Wales Neuro Alliance has developed this survey for people affected by neurological conditions in Wales to complete. This survey seeks to draw on the lived experience of MND patients and their carers, during these times, and will be collated as evidence for the inquiry.
The Motor Neurone Disease Association is facing a devastating drop in income as a result of the COVID-19 crisis. Our group would be grateful if you could support us by playing our Summer Raffle online so that we can continue to support people with MND and their families. Thank you.
Due to the Coronavirus outbreak, the 'Walk To D-feet MND' event on 16th May 2020 has been postponed until 2021.
The Soggy Bottom Boy’s Tribute Band raise hundreds of pounds for good causes every year by performing in local venues. This year our support group was the grateful recipient of £100, and we thank band member Jim Earl for coming along to our meeting at Tŷ Golchi.
Come together with friends and family (children and pets welcome!) for a walk along Llandudno promenade to raise awareness and money for Motor Neuron Disease. 'Walk To D-feet MND' takes place on 16th May 2020 and every step makes a difference. We walk for hope, we walk in support, we walk in memory and we walk so that one day we will see a world free of Motor Neuron Disease.
Click here for more information.
Click here for sponsorship form.
Click here for Walker Registration form and further information. Please note that you may also register on the day.
Thank you to all the customers at M&S Bangor who gave so willingly and generously during our bag packing event on Saturday December 7th. Thank you also to the manager and all the staff for their warm welcome. The total donated came to £584.17!
Click here for more photos.
Today we welcomed a number of people to our monthly get together. Ted Parr attended with his daughter Anne to present a cheque for £702.54 following collections made at Pwllheli. Gloria Williams added another £60 to monies raised by her Great North Run, and Wayne Jones of Spar, Min y Nant, Llanberis Road, Caernarfon presented a cheque for £250 from the Blakemore Foundation via the Independent Retailer Scheme. Jenny Scott from Benllech had also made a box of Christmas cards for us to sell on our fundraising stall.
Click here for more photos.
Today we welcomed Gloria Williams to our gathering at Ty Golchi. She ran the Great North Run and raised £800 in memory of her husband Alun. She also presented a cheque of £200 from Tom Williams who sadly lost his mother to MND. In the photo is Karen (volunteer), Jen (group secretary), Gloria and Bill (group treasurer).
Click here for more photos.
Back in June the Côr y Penrhyn male voice choir, along with the Stavanger Brass Band, held a charity concert for the Motor Neurone Disease Association and St Davids Hospice in honour of Alun Williams, a choir member who sadly died from MND. Last night Richard Shackelford from the MND Association was pleased to attend the choir's rehearsal at Neuadd Ogwen, Bethesda, where he was presented with a cheque for £1000 by Gloria Williams and choir chairman Haydn Davies. Thank you very much Côr y Penrhyn!
On September 10th, Betsi Cadwaladr University Health Board Neurosciences was awarded a Certificate of Partnership by the Motor Neurone Disease Association at the BCUHB Neurosciences Motor Neurone Disease Specific Advisory Group Study Day. In the photo we can see Annette Morris, Director of Neurosciences in BCUHB and Dr Liz Williams, Chair of the Neurosciences Motor Neurone Disease Specific Advisory Group (DSAG) being presented with the Certificate of Partnership by Dr Nicholas Cole, Head of Research for the MND Association.
Click here for more information
Click here to see more photos
At our monthly gathering at Ty Golchi today, Roger Sowersby was handed a token of appreciation from Jo Cunnah (Volunteering Development Coordinator - Wales, NI and Isle of Man) for all his hard work during his time as Group Chairman. We are pleased that he will continue to attend the meetings and take part in fundraising.
Well over 150 people attended an illustrated talk by Andy Fowell, Steve MacVicar and Roger Thomas at Canolfan Beaumaris on Friday 19th July. It was an enjoyable, informative and humorous evening about their epic fundraising cycle journey from Asia (Istanbul) to Anglesey (Holyhead). At the end of the night the grand total raised was revealed and the Motor Neuron Disease Association and St David's Hospice each received £10,131.25! Excellent!
Click here to see more photos
The Llanfairfechan and Penmaenmawr Rotary held a fundraising BBQ and PIZZA at Bryn Hedd, Penmaenmawr on Sunday July 14th to raise money for the North West Wales Motor Neurone Disease Support Group. There was a good turnout on a warm afternoon and an enjoyable time was had by everyone.
Click here to see more photos
The Llanfairfechan and Penmaenmawr Rotary are holding a fundraising BBQ and PIZZA at Bryn Hedd, Penmaenmawr on Sunday July 14th. The fun starts at 12 noon and goes on until 4pm. All proceeds will go to our group and will be used to help those in the area who are affected by Motor Neurone Disease. Tickets cost £10. Hope to see you there!
Click here for more information
On a hot summer's day our lovely volunteers were busy collecting at Tesco Llandudno Junction. It was very easy finding volunteers for today's collection as 4 members of HSBC Llandudno staff kindly came to our rescue and it was so good to have them on board. Tesco customers were extremely generous once again and we collected over £1000!! Excellent! Thank you to Tesco, to our volunteers and to all who donated.
Click here to see more photos
Huge congratulations to Andy Fowell, Steve MacVicar and Roger Thomas who completed their epic cycle journey from Istanbul to Holyhead today. By cycling an average of 65 miles a day over nearly two months, they rode 5,500 miles in total, through four mountain ranges on what’s known as the iron curtain cycle trail. They’ve raised over £20,000 so far for two charities, the MND Association and St David's Hospice. A large crowd awaited as they crossed the bridge over to Anglesey, and pupils from Treffos School had the honour of ticking off on their t-shirts the name of the last of the sixteen countries they had passed through. Please click here if you would like to make a donation
Click here for more photos.
At 7pm on Saturday 1st of June at Bangor Cathedral the Stavanger Brass Band and Côr y Penrhyn male voice choir will perform at a charity concert for the Motor Neurone Disease Association and St Davids Hospice.
This promises to be a very good evening's entertainment. The Stavanger Brass Band from Norway has been successful in a number of brass band competitions in Europe, while Côr y Penrhyn, with its roots in the slate quarrying village of Bethesda in the Ogwen Valley, are famous for their accomplished performances of old favourites and contemporary pieces.
Click here for tickets which cost £10, or pay at the door on the night.
On Friday May 10th we held an information stand at Pwllheli Library where we unveiled our colourful new banners. Pictured on the banners are Sioned Roberts Jones and Roger Sowersby, both living with MND in North West Wales. We are very grateful to Sional for making such a fine job of our new banners and look forward to showing them off at the fundraising events we have coming up during the summer.
Today we welcomed Maggie Morris to our gathering at Ty Golchi. She handed a cheque for £800 to our Treasurer, Bill Griffiths, in memory of her dear daughter Anwen Gibson of Dwygyfylchi.
Click here for more photos.
At our March meeting we were pleased to welcome Suzanne Simpson from the Walton Centre. She is visiting a number of groups and branches in her role as MND Psychological Well-being and Social Support Advisor. Suzanne is seated in the middle of the front row with our chair Roger Sowersby on the right.
Calling all fishermen - here's your chance to take part in a fishing competition AND raise money for MND Association!
Date: 13th April
Venue: Holyhead Breakwater
Time: 4pm - 12am
Asia to Anglesey have arranged two fun events next month before they fly off to Istanbul. The first is on Saturday 9th March and is a cycle tour of all the Bull Inns on Anglesey. You are very welcome to cycle all or part of the route with Steve MacVicar, Andy Fowell and Roger Thomas, or you can join them in one of the pubs where they would be glad to meet you.
Click here for more information.
The second event is a Celtic Music evening with Band y Braich Melyn at Canolfan Beaumaris on Friday 15th March. There will be live music, dance, spot prizes and a raffle. Entrance costs £10.
On the 28th March 2019 Steve MacVicar, Andy Fowell and Roger Thomas will fly to Istanbul, Turkey and spend the next eight weeks cycling home across Europe to Anglesey. Their aim is to raise £10,000 towards the MND Association and £10,000 towards the new St David's Hospice in Holyhead. Over two months they will cycle 5500 kilometres, cross 14 countries and climb 4 mountain ranges!
Click on their Facebook page to find out more and if you can please donate to support them.
Thanks to Pat Jones (Charity Champion) for allowing us to collect for the North West Wales MND Support Group at the Bangor Tesco Store on Saturday 2nd February. The customers were ever so generous on a cold and frosty day and we raised £992.01! We have a brilliant team of volunteers who deserve a huge vote of thanks especially Roger who travelled by bus to Bangor and from the Town Clock to Tesco by wheelchair (and back to base)! Also, on Monday 4th February our stall of donated items at Ysbyty Gwynedd raised £173.25, making a grand total of £1,165.26p!
UPDATE: On Friday 15th February our hardworking volunteers were at Tesco Caernarfon where £517.62 was raised, bringing the grand total for February to £1,682.88! Thank you very much to everyone who supported our collectors.
Thank you to all the customers at M&S Bangor who gave so willingly and generously during our bag packing event on Saturday December 1st. Thank you also to the manager and all the staff for their warm welcome. The total donated came to £506.46!
The North Wales MND Care Cooordination Service was launched in February 2017 when Kathryn Lancelotte and Angela Mitchell began working as MND Care Coordinators. They are employed by Betsi Cadwaladr University Health Booard (BCUHB), funded by a MND Association Ice Bucket Challenge innovation grant. The funding ran until October 2018 with a commitment from the Health Board to take up the funding if the service met agreed objectives.
These objectives included:
All the objectives agreed were met within 13 months and a process to agree ongoing funding from the Health Board began on 13th March with a presentation to senior representatives of the Health Board supported by Sally Light, MND Association Chief Executive. Further tough funding meetings were held with various decision-making groups within the Health Board before ongoing funding was confirmed on 5th September.
Whilst we celebrate the continuation of the MND Care Coordinator posts, we are not complacent, recognising that there is still much that we can do to continue to improve MND services in North Wales. The MND Care Coordination Steering Group continues to meet and new objectives are currently being agreed with the Health Board. We are fortunate that the Health Board recognises the expertise and knowledge within the MND Association and has asked Kevin Thomas, RCDA, to continue as a member of the MND Care Coordination Steering Group.
More information about Kevin Thomas and Kathryn Lancelotte - click here
We have a new JustGiving page to raise money for our group! If you would like to make a donation to provide support to local people with MND, their families and carers, then please click here.
Thank you very much.
A big 'Thank You' to the Bethel ladies who held a Coffee Afternoon to raise money for MND and Macmillan. There were stalls, a raffle and a tombola. There was a good turnout by the villagers and over £700 was raised! Excellent!
At our September meeting we were pleased to welcome the Chairman of the Manchester and District Branch of the MND Association. Phil Bennet was on holiday in the area and learnt of our meeting from volunteers who held a bucket collection at Tesco in Porthmadog on September 7th. This collectionn raised £720.14 and we thank all the Tesco customers for their support.
Click here to see the photos.
It was also good to welcome Ted Parr and his daughter Ann. He was there to present a cheque for £750 - excellent fundraising Ted!
Click here to see the photos.
If you are free at 2pm on Friday, September 28th then you are welcome to come along to Bethel Village Hall for a coffee and a cake. There will stalls and a raffle and an opportunity to socialise while raising money for the North West Wales Support Group.
Today John Williams retired from the post of Treasurer of the North West Wales MND Support Group. He has been Treasurer for twenty five years, as well as being the Secretary for a good many of those years too. We thank John very much for his hard work on behalf of MND and we look forward to continuing to see him at our meetings. In the photo we can see John (on the left) with the new Treasurer, Bill Griffiths.
There is an article about our group in "Thumb Print", our charity's magazine, this month - the first time they've ever printed a story in Welsh! We are on page 6 and 7 - click here to read the e-book or click here to read the pdf.
Thank you very much to everyone who supported our stall at Ysbyty Gwynedd today - we made a total of £167.81!
Here are the team of collectors at Bangor's Tesco Extra. Once again the customers were VERY generous - to the tune of £799.55!! Thank you all for your time and effort and a special thanks to the Llanfairfechan & Penmaenmawr Rotarians (and Lykke from our Inner Wheel Club) for stepping in to save the day - very much appreciated!
Click here to see the photos.
The North Wales Walk to D'feet MND took place on Llandudno prom on Saturday June 16th. Thank you to all who came to walk, and a big thank you to everyone who sponsored us.
Click here to see the photos.
We were pleased to welcome Gwen Owen who attended our monthly meeting to present a cheque for £100 to the group. Here she is with John Williams and Roger Sowersby.
A Big Charity Quiz on behalf of the Motor Neuron Disease Association will be held on Friday 13th July 2018. Click here for more information.
On 7:30pm on June 9th 2018 The Sirenian Singers will perform the Mozart Requiem at St Giles Parish Church Wrexham. Taking part will be soloists Fflur Wyn (Soprano), Oliver Sammons (Baritone), Andrew Powis (Tenor) and Chloe Pardoe (Mezzo). All profits from the concert will be donated to The Motor Neuron Disease Association. Please click here for more information. Click here to buy tickets.
At this month's meeting an appeal was made for volunteers to help with the bucket collection at Tesco Bangor on Friday July 6th 2018. Can you spare two hours? If so, please get in touch: Roger Sowersby - rogersowersby@gmail.com
Come together with friends and family (children and pets welcome!) for a 3.5 walk in aid of Motor Neuron Disease on Llandudno Pier. Registration from 10:30am and walk begins at 11am.
Click here for more information
Click here for Registration Form (Please complete this and return to Roger Sowersby at the address shown on the form to register for the walk. This will enable us to order the correct number of T-shirts.)
Click here for Sponsorship Form
We were pleased to meet Paula and Rupert Leslie of Porthmadog at Ty Golchi today. Paula handed our Treasurer, John, £450 towards helping patients in our area which was raised at a Ladies Evening at the St. Cyngar Masonic Lodge, Porthmadog recently.
The scones and teacakes were lovely at Ty Golchi today where we had an opportunity to share experiences and discuss items for the next Newsletter.
Today at our monthly Support Group meeting we were pleased to be able to launch our new bilingual website for those living with MND in the area, their carers, their family and their friends. Kevin Thomas, Regional Care Development Adviser, said "It looks fantastic. Well done and thank you so much to the team at Delwedd. The site looks very friendly and welcoming to users”.
A huge thanks to Delwedd for sponsoring our website.
Princess Anne, who is Royal Patron of the association, attended a reception at Aberystwyth Arts Centre on Tuesday to celebrate the work done in Wales by volunteers for the Motor Neurone Disease Association. She met people living with MND, their families and carers and she gave a speech.
At the event were five members of the North West Wales Support Group. Princess Anne met Kevin Thomas, Jo Cunnah, Roger Sowersby, Jennifer Roberts and Ceri Roberts. After lunch Jennifer Roberts gave a talk about her experience of MND and how she became involved in volunteering.
We had a lovely festive christmas lunch at Ty Golchi today.
A big THANK YOU to all who came to help pack bags at M&S Bangor on Saturday 2nd December.
Thank you to the manager and all the staff, and especially to all the customers who gave so willingly and generously, helping us raise £604.47 towards supporting MND sufferers in our area.
Please note: there is no meeting in January 2025.
The next support meeting will be at Ty Golchi, Caernarfon Road, Bangor LL57 4BT on Wednesday February 12 at 2:30pm.
MND Connect - 0808 802 6262
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