Welcome to the Suffolk Support Group

The group is run entirely by volunteers and aims to provide the best possible support to local people with MND, their families and carers.

Neurological Care Breaks Scheme

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Recruitment 

We have new volunteering opportunities available. Whether you can offer a few hours or more, your time will make a difference.

Click the links to learn more and apply (each link opens in a new window/tab).

Trust Fundraiser

Association Visitor

Care Service Navigator

Fundraiser

Media Relations Volunteer 

Join Our Expert by Experience Advisory Group

Are you a relative or close friend of someone with MND? Have you helped them with their interactions with health and social care staff? If so, we invite you to join our Expert by Experience Advisory Group for a research study on ‘Optimising Care Pathways in Motor Neurone Disease for Family Carers.’

We are looking for people who are or were supporting someone with MND.

If you are interested in this role or want more information, please email us on [email protected] or call Linda Birt, our lead researcher, on 07741477941.

Latest News

Could you do 5,000 squats in a month?

This November, join us in taking on the #5000SquatsForMNDA challenge. We're asking all our amazing supporters to complete 5,000 squats over the month. Each squat represents one of the 5,000 people living with MND in the UK. Every squat you do helps raise awareness and funds for our charity. When your legs are burning and you feel like giving up, remember the strength and resilience of those living with MND. 

Join our Facebook challenges here

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Winter Raffle 2024
For just £1 per ticket, you could win some great prizes while supporting people affected by MND. Every ticket helps raise awareness and funds important research. We're aiming to raise £100,000 to provide care and support. The top prize is £5,000, with other cash prizes up for grabs. Remember closing date for entries is Thursday 19 December 2024 and the draw is on Friday 3 January 2025. 
 
 
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Cost of living support fund increase from 1 November
We understand that living with MND comes with many challenges, especially with the rising cost of living. That's why, starting 1 November, we're increasing our annual support from £350 to £500. This support can help cover essential costs like household bills and food shopping. If you’re living with MND, you can apply without any means testing. For those who've already received the previous limit of £350 this year, you can apply for an additional £150 from 1 November.
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Christmas concert

A sparkling Christmas concert will be held at the beautiful St Mary's Church in Marylebone, London on Thursday 12 December, with Christmas songs and carols led by the renowned London International Gospel Choir, plus readings from some very special VIP guests. Tickets are on sale now. Please note that people living with MND who require a carer will only pay for one ticket, the carer ticket will be free of charge. Children under 5 are also free. 

Get your tickets here

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2025 Support group meetings

Face-to-face support groups

Tea, coffee, and a catch-up (Hawstead)

Drink some tea or coffee, nibble some cake and chat with other families living with and affected by MND. Neurological nurses and Association volunteers will be there to meet and greet you. Soup and a roll will be served for the winter lunch time meetings.

Location: Village Hall, The Green, Hawstead, IP29 5NP

Dates:  These take place on the third Wednesday of the month with 2025 dates as follows (please note the different starting times which correspond with the clocks changing):

  • 15th January 12 noon to 2pm
  • 19th February 12 noon to 2pm
  • 19th March 12 noon to 2pm
  • 16th April 2pm to 4pm
  • 21st May 2pm to 4pm
  • 18th June 2pm to 4pm
  • 16th July 2pm to 4pm
  • 20th August 2pm to 4pm
  • 17th September 2pm to 4pm
  • 15th October 2pm to 4pm
  • 19th November 12 noon to 2pm

Contact: For further details, please contact Janet Oliver on 01359 241084 or [email protected].


Tea, coffee, and a catch-up (Ipswich)

Drink some tea or coffee, nibble some cake and chat with other families living with and affected by MND. Neurological nurses and Association volunteers will be there to meet and greet you. .

Location: Millennium Jubilee Hall, Millennium Way, Kesgrave, Ipswich, IP5 2EN

Dates: These take place on the second Tuesday of the month from 10.30am-12.30pm with confirmed upcoming dates as follows:

  • 10th December

Contact: For further details, please contact Sandy Harvey on 07905 655 151 or [email protected] 


Online support groups

All about the MND Association 

This online group has been designed for anyone who lives in East Anglia and has either recently been diagnosed with MND or has been diagnosed but has not yet connected in with the MND Association. Run via Zoom these sessions are led by our Area Support Coordinator Liz Cooper

For more information and upcoming dates contact Liz Cooper

National and Regional online groups

Details of other online support groups are available on our online support groups page. 

The page includes details of groups including the South East regions recently diagnosed group, peer to peer support group and online groups for carers (daytime and evening groups).

Contact details are provided for each group, if you have any questions please get in touch with the named contact. 

Meet the team . . .

Liz Cooper - Area Support Coordinator

photo of suffolk group member Liz Cooper

As the Area Support Coordinator for East Anglia, I lead on the provision of support to families and professionals via our national and local team including Association volunteers who are supporting families in Suffolk and across East Anglia. Along with my colleague Alli Anthony (Service Development Manager), Roger Widdecombe (Regional Fundraiser) and other regional and national colleagues in Campaigning, Communications and the National Care team we endeavour to hear the voices of and support all people affected by MND.

Over the years I have been overwhelmed by the commitment of our volunteers in all manor of roles including Association Visitors, Care Service Navigators and branch and group Committee Members. I hope this newsletter goes some way to introducing you to our small but amazingly supportive Suffolk Team, some having volunteered with us for over 40 years (sorry Janet, but I felt it had to be said)! We look forward to supporting you and working with you in the future and particularly look forward to seeing some of you again in person!

Gill Solway - Association Visitor

photo of suffolk group member Gill Solway

 

I’m Gill Solway and I’ve volunteered as Association Visitor for East Suffolk for nearly 3 years. The diagnosis of MND has been described to me as ‘a grenade thrown into your life’ and it affects not only the person with MND but also family & friends. Hopefully I can help to steer families through this initial barrage of information and then continue to support and advise for the times ahead.

I enjoy supporting the family as a whole, via phone, email or my latest hard learnt skill - FaceTime. Hopefully we can resume face to face visits at home (milk no sugar, thank you)! Doing this work has opened my eyes to the impact and difficulties of this disease and I’m learning all the time, but I also see courage, determination, humour and extraordinary love, care and devotion. It’s a privilege to share in that.

John Scott - Association Visitor

photo of suffolk group member John Scott

My name is John Scott I’ve been a volunteer MND Association Visitor for West Suffolk for approximately 2.5 years.  My colleague Gill Solway and I cover the whole of Suffolk.  I am very fortunate to work with Gill who does an excellent job on the East of the County.

I think Gill has summed  up the role of Association Visitor extremely well.  It is a very rewarding role.  I will always do my very best to help people with MND,  their families and friends in whatever way I can.  I am lucky to be part of a small effective team under the Leadership of Liz Cooper.  The most important lesson I’ve learnt is the people diagnosed with MND do not have the gift of time- speed to get action in whatever way is necessary is absolutely vital

Janet Oliver - Suffolk Group Contact

photo of suffolk group member Janet Oliver

I first became aware of Motor Neurone Disease in 1983 when a work colleague was diagnosed. The company I worked for supported the Association and we undertook several fundraising events and formed the Bury St Edmunds Branch in 1984. This eventually closed, but in 1992 I became aware of a Sudbury lady living with MND who had planned a meeting of anyone interested in setting up a new Suffolk Branch. I went along to that meeting, and, as they say, the rest is history.

Since then I have been involved with the Association in various capacities. Fundraiser, Secretary, Treasurer and my current role is contact for the Suffolk Area, whilst in recent years I have been attending the MND clinic in Bury St Edmunds and helping with the West Suffolk Support Group meetings held in Hawstead.

Kate Barber - MND Coordinator for East Suffolk (NHS Nurse)

photo of suffolk group member Kate Barber

“Most of you will already know Kate as one of your first contacts after diagnosis.  Before she came to be our MND coordinator there was no one to cohesively draw all the many health care professionals together to provide the advice and support you all deserve. Kate has been described by one person with MND as Mary Poppins and she certainly always opens that carpet bag and pulls out a solution for all the wide ranging issues she manages, always with care and compassion. I’m proud to call Kate my friend and colleague.” - Gill Solway

Wendy Pott - Support Meeting Coordinator (West Suffolk)

photo of suffolk group member Wendy Pott

 

Wendy Pott - Support Meeting Coordinator (West Suffolk)

I’m Wendy Pott and I have been a volunteer with the West Suffolk Support Group for the past three years. I took early retirement from working at the West Suffolk College to look after  my Husband who I lost to MND in 2017.  My main hobby is gardening but I also love reading and swimming and I’m lucky enough to have lots of friends who I spend time with and also foreign travel.  I’m always busy.

Together with Janet we arrange the monthly support group meetings at Hawstead Village Hall for anyone who would like to come be it people living with MND, their partners, carers and/or family.

My Husband used to thoroughly enjoy the meetings. We offer a friendly atmosphere where people can have tea and cake (or soup in the winter!)  and a general chit chat with everybody.  We periodically have speakers for part of our meetings where time is given for people to ask questions.  There are a number of publications on view for people to look at and should they need any further help or information we are there to guide them.  We do find that people like a good chat and a laugh in what is a difficult time in their lives which I personally can totally agree with.

Mark Gately - Campaigns Contact

photo of suffolk group member Mark Gately

I volunteered to help in the Suffolk Group as I spend a lot of time in the county. I am the Branch Chair and Campaigns Contact in North West Kent, so I thought it would be fairly easy to duplicate my Campaigns work over in Suffolk. In this role, I keep abreast of any problems in the Group area and further afield for National Campaigns and have contacted various Local Councillors and MPs requesting their support for our national campaigns and local issues.

I hope to assist with support meetings in the future as my home is a short drive to Hawstead. If you would like more information on how to get involved in campaigns then please do contact me.

Nicky McGreavy, Sarah Ward, Ursula Noyce - Community Neurology Specialist Nurses

photo of suffolk group Community Nurses

 

We are your Community Neurology Specialist Nurses: Nicky Mcgreavy, Sarah Ward and Ursula Noyce. We cover the whole of West Suffolk, and our service covers office hours from Monday to Friday. Our role is to offer support, information and advice, and to refer onto other relevant health professionals, if needed. We work very closely with the Neurologist Dr Crawley, speech and language therapists, dieticians, Neuro-physiotherapy and Neuro-occupational therapy. We visit people at home and also see people in a clinic setting.

Before Covid-19, with MND Association volunteers, we ran a support group at Hawstead village hall. With positive feedback on the support and help from the group, we are hopeful we can resume this, with an upcoming catch-up in November!