Branch news

Want to make a difference?  Read about our Volunteer Vacancies.

Volunteers play an important role in the MND Association. The South Yorkshire Branch is looking for more volunteers to get involved, to help ensure that people with MND, their carers, and their families receive the support and services they need.

Currently, we are looking to recruit more Association Visitors.

Train and volunteer as an Association Visitor: Do you enjoy listening to and helping people? Are you looking for a volunteering role where you can do just that, and fits in around your family, studies, or other commitments? By becoming an Association Visitor and donating your time, energy, and skills, you can make a real difference in the lives of people affected by MND.

The role is currently by phone, email, video, and text from the comfort of your own home. Expenses will be reimbursed. Basic IT skills and access to a computer are required.

The role of the Association Visitor includes the following tasks:

  • offer emotional support to people living with and affected by MND
  • provide information to people living with MND, their carers, and families
  • help people living with MND make informed choices
  • help people to access appropriate services/support
  • explain how the MND Association can support people living with MND, their carers, and families
  • record information, following the MND Association guidelines and local protocols
  • develop and maintain relationships with our local Branch or Group
  • attend support and supervision meetings, as well as development events.

The role offers flexible hours, but we would like Association Visitors to give 2 to 3 hours of their time each week. For this role, you need to be able to work as part of a team, liaise with health and social care professionals and have the ability to develop and maintain supportive relationships.

You will receive a comprehensive induction, this is currently by video platform Zoom online.

Although the branch is run by a committee, you do not need to join the committee in order to volunteer. There are many tasks relating to fundraising, publicity, social media and events with which you could help. Your time commitment can be as much, or as little, as you can spare.

If you can help in any way, please do contact us. The more volunteers we have, the more support we can provide for people with MND, their carers, and their families.

Whatever your skills, background, and age, we can find a role for you.

Recycling Equipment:

Unfortunately, the branch has no facilities to store, check or refurbish equipment but we are happy to advertise any items that people want to pass on when they are no longer useful.  Scroll down to the equipment section of the Useful Information page

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 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 of photography competition open to all amateur photographers. Take a look at the competition poster on our Events page.

Navigating Technology for your appointments. Martin has kindly shared his experience of using 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.

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. When her groups were not allowed to meet she set up an online link instead and asked that participants make a donation to the branch. Over £500 was raised, Making a donation was much easier than the Bootcamp exercises without a doubt!

New Website brings myTube and myBreathing together as mymnd

At one of our previous open meetings, 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.

myBreathing is one of the helpful sites to learn about breathing support and ventilation in MND. myTube is an award-winning site that 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.

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 one of our Sheffield open meetings, 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 2019 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 healthy 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 the Association research blog.

Dad's Army Dinner Dance

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 2019 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

"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 choose 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 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