Branch news

Open Meetings . Although we're not holding any branch Open Meetings at our usual venues at present, the question and answer session Ask the Panel which took place online went very well. A number of Health Professionals, mainly from the Sheffield Neuroenablement team joined the meeting and helped to answer questions about the management of MND and a number of issues. This was an open meeting so everyone was welcome, and it is hoped that we can organise similar meetings in the future. The meeting was recorded and we will be uploading it here soon so you can benefit from some of the advice and information that was shared.

The Local Services page has more information about teams in South Yorkshire and has some useful telephone numbers.

You can use any camera. We used to think you needed expensive heavy equipment to take photos like a professional, but many people can take brilliant photos on their phones too. It's not always the equipment that makes the difference but sometimes it's the subject matter. Calling the Shots is a new branch photography competition open to all amateur photographers. Take a look at the competition poster on our Events and Fundraising page.

Geoff is holding "Simples Quiz nights" every Tuesday evening at 8.00pm. They are proving to be great fun and a good way to keep in touch with everybody. The entry is free for teams or individuals and although there are no prizes there will be some recognition for the overall winner in the future. If you already use zoom the meeting ID is 854 0224 5350  Password SYMNDA.  If you're not sure how to access this resource and need help sorting the app Geoff will be pleased to help you. Tel:01226 245811 gbland7@sky.com

 

Navigating Technology for your appointments. Martin has kindly shared his experience of using the various technologies to continue communications and treatments at this time.

Coming to Terms. Rhys from Sheffield has explained how he has coped since his diagnosis and what has changed as a result of the pandemic.. Read both accounts in Useful Information.

Latest Coronavirus Advice Video plus information on Shielding and Protecting vulnerable persons from Covid-19

Watch the video and visit the MND Association Home page for more information.

Big Steps of Hope tribute walk. Vicky Paeschel is continuing her crazy home challenges, and still continuing with the plans for the Virtual Big Steps of Hope Walk in August. Visit the Events and Fundraising page for more details.

Thank you to Tracy Woodward. Tracy is a long time supporter of the branch and has completed many half marathons with us. Tracy also has her own fitness organisation Fit for It and runs Saturday morning Bootcamps in South Yorkshire. As her groups cannot meet at present she has set up an online link instead and asked that participants make a donation to the branch. Making a donation is much easier than the Bootcamp exercises without a doubt!

Bye Bye Jane - After 22 years with the Association our former Regional Care Adviser Jane Evans finished work on the 24th March. We would all like to thank her for everything she's done for the Association and particularly for the branch. Best of luck for the future Jane. The branch wanted to mark Jane's leaving with a presentation and evening out. Many people contributed to her leaving gift but unfortunately the pandemic and the lockdown guidelines prohibit any large meetings or celebrations at present. As an interim measure and to show our appreciation of Jane's work a small outdoor gathering was held. Mel White gave the speech via a Zoom platform and Andy Jaffray made the presentation of flowers, chocolate, vouchers and of course some running gear. Dave Booker and Andy took some photos and we've uploaded a few to the Photostream on Flickr for everyone to see.

Jayne Thompson took up the post of Area Support Co-ordinator at the beginning of March. We would like to welcome her and wish her good luck with the job. She has joined the Association at such a difficult time and although many of the volunteers have spoken to her, we're not sure when she'll get to meet everyone.

New Website brings myTube and myBreathing together as  mymnd

At one of our open meetings last year Cathy Soreny came along to talk about the final adjustments they were making to the new website myBreathing. She wanted feedback from the meeting, and now the project is complete the mymnd website has been launched this week.

myBreathing is one of the helpful sites to learn about breathing support and ventilation in MND. myTube is the award winning site which gives information about nutrition support and feeding tubes and has been used extensively over the past few years.

Many people living locally with MND have been involved with the making of these excellent resources. Congratulations to everyone involved.

AGM

The Branch AGM was held on February 18th and was well attended. Kirstine Booy was welcomed on to the committee as Assistant Treasurer and the existing committee members were also re elected.

Long service medals were presented to Brian Jackson, Geoff Bland, Ann Quinn and Marlene Bryan.

Our Social media administrator Chloe Allen is also a PhD Student at SITraN. Chloe kindly came along to give a talk about her experience attending the MND/ALS Symposium in Perth Australia in December.

Getting Involved with Research. An Invitation from Sean White.

Have you made a decision about feeding tube placement? Would you like to help inform the design of a research project about how these decisions are made?
We are planning a study to explore the decision making processes that take place when people living with MND are faced with the choice to have a feeding tube (e.g. gastrostomy or PEG) placed. It is important that the people with lived experience of making this decision are involved in the design of the research. If you are interested in either joining a group of people living with MND or a one to-one discussion, to help in the design of this research, please can you contact the lead researcher, Sean White, on 07919541321 or e-mail at sean.white@sheffield.ac.uk.     More details here

Sheffield Open Meeting. Research Update. 

During a Sheffield open meeting last year, Mel White, took the opportunity to share a video made by Dame Professor Pam Shaw about developments at the Sheffield Institute for Translational Neuroscience SITraN.

People who came to the July 19 meeting at the Botanical Gardens had the chance to hear Pam Shaw's talk live, and it was very well received. She made an appeal for volunteers for the Biomarker project. In addition to people with MND giving their time and providing samples, the researchers also need heathy volunteers for the control arm of the research. More information about the appeal and this project here. Professor Shaw kindly agreed to make a recording of the talk with an introduction by our Patron Suzanne Maguire. Click below.

To read more research news, including an update from the International Symposium last December sign up for to the Association research blog.

 

The last event marking the 40th Anniversary of the Association in 2019 was a Dad's Army themed Dinner Dance in Rotherham. In addition to the dinner, dance and fundraising activities there was a  rifle and bayonet display by the Pontefract Home Guard and a Dame Vera Lynn tribute. It was a really fun evening, raising funds and awareness. Thanks to Geoff and his team for all the hard work in organising it. Fabulous photos here or there's an album on Flickr

     

40th Anniversary Meadowhall Event

 

 

On Sunday 6th October, the branch marked the 40th anniversary of the Association with an event at Meadowhall. In addition to the lighting up of the building in MND colours, there was a stand outside the House of Fraser store and an MND branch walk around the mall. We were joined by colleagues from SITraN and our Patron Suzanne.

It was a great opportunity to explain to shoppers and the general public, what happens in MND, how research into a cure is progressing and what the association both nationally and locally is doing to support people

To Bridget Hemstock and the Clowne Road Runners for hosting a brilliant Half Marathon event on Sunday 24th November, and to everyone who got involved too. We had a great team of runners and an excellent team supporting us on the day. Bridget has been fundraising for the association ever since her Mum was diagnosed in 2018. This event and others will have raised thousands of pounds and, although her Mum Lorna diedlast year, Bridget is carrying on with events and challenges in 2020. See the race photos on Flickr

To the organisers and musicians of Hartfest 2019. Lyndsey and Steve Allison with the help of their local landlord John Saynor staged a very successful music festival this autumn. Held at the Blue Bell in Harthill, the event raised a grand total of £2700 for three charities. Phil Booth, one of the musicians, has personal experience of MND and was very pleased that the funds of the  South Yorkshire Branch of the MND Association would benefit from £900. The team invited a photographer from the Rotherham advertiser for the cheque presentation and Ann Quinn was delighted to accept it.

 

To one of our committee members Vicky Paeschel. Vicky was welcomed as one of 3 new trustees at the MND Association AGM in July 2019. Vicky was also very successful this summer in raising awareness of MND in the local press and on local radio, talking about her Big Steps Walk event in Graves Park Sheffield. Over 100 people took part at the August Bank Holiday in glorious sunshine.

Vicky has already set up the 2020 Big Steps of Hope for Sunday 23rd August. See events for more details.

To our brilliant and dedicated Social Media Administrator Chloe Allen. Chloe completed a PhD at SITraN in Sheffield and had one of her papers accepted for the programme of the International MND Symposium in Perth Australia. Her talk was entitled " Antioxidant drugs reveal the potential for patient stratification in Motor Neurone Disease." We hope  Chloe will be able to come along to one of our meetings next year, to tell us about her experience and explain about her work.

Thanks to everyone who came along to our Walk to D'Feet at Doncaster. A great way to raise awareness and a really fun event again.

More photos on Flickr

Read our latest branch newsletter here , and important dates and fundraisers coming up will be in  events

Cavendish Care Centre is closed for all face to face sessions. See the website for more information. www.cavcare.org.uk

Clifford House. Whirlow Sheffield:

Closed until Further notice.

Opening times. 10.00am - 4.00pm Tues Weds Thurs. Weds 5pm - 7.00pm
A place to relax and socialise within beautiful, peaceful surroundings. Open to everyone affected by an illness that has no cure. There is a monthly timetable of activities to chose from and advice and information from professionals and volunteers. St Lukes Clifford House

"Research Today: Implications for Tomorrow"

This talk, given at the 2018 branch AGM generated a lot of interest. Dr Brian Dickie from the association outlined some of the association funded research projects and explained how they work closely with the fantastic SITraN facility here in Sheffield. The association's research pages give an overview of what is happening, plus fact sheets and information on how to get involved. The research blog gives up to date scientific news, and you can get this sent directly to your own email address.

The Association is constantly updating its Publications and Resources. The link below will help you decide if you want to know more about the many aspects of living with MND on a day to day basis. There are many different formats to chose from and help is always available if you want something explained in more detail.  All the information you need.

To donate directly to the South Yorkshire branch JustGiving page please follow the link below.
https://www.justgiving.com/MNDA-South-Yorkshire

Cheques made payable to MND Association South Yorkshire can be sent to our Treasurer Paul Hebblethwaite 55 Newfield Lane Sheffield S17 3DD or can be paid in directly to the branch account 02972378 sort code 30-96-09

To join your own JustGiving fundraising page to our branch team members page please use the link below and click  join the team. Full instructions are at the bottom of our events and fundraising page.

https://www.justgiving.com/teams/South-Yorkshire-Branch

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262