Branch news

Support Groups on zoom

Although we cannot hold actual open meetings at present, we are holding virtual meetings.

We presently have a regular peer support group for people with MND held on a Monday afternoon.

The next date is May 10th 2.30pm

People with MND and their partners/spouse/carer are welcome to come along for an informal chat and to share their experiences.

For more information and to get the zoom link contact Brian Jackson Association Visitor. associationvisitor.bj@gmail.com

If you are newly diagnosed and would like to talk to others in a similar situation the Association has a national online forum. forum.mndassociation.org or if you would like something set up locally please get in touch.

We also have regular meetings on a Monday and Thursday afternoon that we hold just for Carers. The next meeting dates are:

Thursday 15th April 2.00pm

Monday 19th April 2.30pm 

For more details contact Ann Quinn mndvisitor@gmail.com.

Want to make a difference? Can you help us?  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.

The branch committee was elected at the last AGM in February but we're also looking for more people to join our Communication and Fundraising subgroups. These small groups hold informal meetings which presently take place via zoom. We produce quarterly newsletters and aim to communicate the work of the branch through our Twitter and Facebook platforms. We are currently interviewing for people to take up our Media Relations role too. As a communication subgroup we meet every six weeks to take all this work forward. If you can contribute in any way and you'd like to attend our zoom meetings please contact Chris Naylor chris222@sky.com

The Fundraising subgroup also meets on a regular basis to discuss how they can support anyone fundraising for the Association and also to plan branch fundraising events. This group would welcome anyone willing to come along with new input and new ideas or just to be an extra pair of hands at the bigger events which will be taking place again in the future. Contact Dave Booker DaveBooker@talktalk.net

Currently we are looking to recruit a new  Branch Contact. We also need more Association Visitors.

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 training and induction to the role. Currently being held on line.

Have access to a range of workshops and events

What’s the next step?

Express your interest or get further information by emailing Chris Naylor chris222@sky.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.

Calling the Shots our  branch photography competition has been extended and entries will now be taken up to February 2022 so there's plenty of time to shoot and chose your best photo. Open to all amateur photographers. Take a look at the competition details on our Events and Fundraising page.

The branch is also looking for businesses to support this fundraiser by Sponsoring a Page of the Calendar. For all details about the competition and sponsorship opportunity email contact@calcomp.co.uk

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.

Watch the video and visit the MND Association Home page for more information about the coronavirus information produced by the Association.

The Websites  myTube and myBreathing have 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.

Sheffield Open Meeting. Research Update. 

Dame Professor Pam Shaw came along to the AGM in February to update us on develpments at SITraN and we will hopefully be sharing that with you soon.

During one of our previous 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 over the past few years.

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 Cavendish Care Centre is closed for all face to face sessions but is offering virtual support on line as well as counselling. 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