Branch news

Branch AGM Tuesday 16th February 2021 6.00pm   Contact Mel White symndchair@yahoo.co.uk Mel will send the meeting link.

The next branch Annual General Meeting will take place on line via zoom. It is an Open meeting and everyone will be welcome to join us.

In addition to the brief business meeting including the annual accounts there are 2 important items on the agenda.

  • Election of a new Chairman. Our present Chairman Mel White will be resigning and handing over the role of Branch Chair to Dr Andrew Gibson.
  • Professor Dame Pamela Shaw from SITraN and the Care Centre will be giving an update on research. Professor Shaw last talked to the branch at our Open meeting at the Botanical Gardens in 2019 and she will expand on some of the developments she talked about then.

The opportunity to meet the branch committee and other branch members has never been easier. If you would like further details about how to join using zoom on your laptop or computer please contact Mel anyone on the branch committee.

 

Children's Party Saturday 23rd January 12.30pm   Contact Brian Jackson for the zoom link associationvisitor.bj@gmail.com

 

The branch is looking at ways to give children and young people who have been affected by MND a treat. A virtual party offered by a specialist organiser is one positive way forward.  A great way to start we think...

If you know of children or young people affected by MND who may be interested or if you'd like more information please contact Brian Jackson associationvisitor.bj@gmail.com Brian or any of the branch committee will send you the zoom link.

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 a new  Branch Contact. We also need more Association Visitors.

The South Yorkshire Branch of the Motor Neurone Disease Association (MNDA) requires a Branch Contact. A branch contact person is available to maintain contact with people with MND, their families and carers living in the South Yorkshire area. They inform them of the work of the branch/group and the Association and become the first point of contact.

What’s involved?

The Branch/Group Contact responds to calls and e-mails from people affected by MND, supporters and prospective volunteers

Provides clear and up-to-date information about the MND Association and branch/group activities

Signposts people to appropriate alternative sources of help, advice and information

This role will suit me if: -

I’m able to communicate clearly and effectively, with a calm and confident telephone manner and a patient and empathetic approach

I have an understanding of MND and its impact on families, or a willingness to learn

I understand the need for confidentiality and the importance of data protection

What’s in it for me?

The opportunity to be a vital link between people living with and affected by MND and the local support networks

To become part of a friendly and dedicated local team

Have access to a range of workshops and events

How flexible is the role?

The time required to undertake this role is flexible but we expect the Branch Contact to respond to enquiries, follow-up calls and emails regularly (approx. 2 hours per week)

What sort of training/induction will I receive before starting?

You’ll be inducted into the role and informed about the Association. As part of this, you will receive E-learning and face-to-face training.

What’s the next step?

Express your interest or get further information by emailing Mel White symnda@yahoo.com.

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 to 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 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 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

 

Open Meetings . 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 last year 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 recording of the meeting is available 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 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.

NB. Quiz nights are not taking place at present. 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.

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 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 2020

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 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 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 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

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