Other UK MS Organisations

Below are a list of useful and informative webpages set-up by other MS Organisations and MSers themselves:

Action MS is a ‘home grown’ charity that has been working in Northern Ireland since 1976. It all began when a small group of Belfast folk with MS, led by Ann Walker, decided to fight back and do something about beating this most distressing disease. In those early days it was all about fund-raising for medical research work to help find a cure. But as people got together and raised hundreds of thousands of pounds for research they also talked through their personal experiences of living with MS. In conversation and in listening to one another a determination developed to do something more for families facing a very bleak future. Seeds of compassion were sown and various kinds of practical help to meet individual needs began to take shape.

Now Action MS, as well as maintaining a highly successful fund-raising programme, provides a comprehensive range of caring ‘actions’ or support that has evolved over the years out of conversations with people and families living with MS. The provision of the right kind of care at the right time in the right place is their constant goal.

All About Multiple Sclerosis has grown into an enormous site and present and future projects will make it even larger. It has become more than a full-time job for one person. The costs of running it - web hosting, domain name costs, online time, other ISP charges and other costs grow continually. So far, I have funded the site entirely out of my own pocket, both in terms of these charges and my time. Because my own personal funds are becoming exhausted, I can no longer work full-time on the site without external funding.

As a result we are forming a charitable organisation called the Multiple Sclerosis Information Trust the purpose of which is to raise funds to keep this project going. Read the Aims of the Multiple Sclerosis Information Trust here.

The All About Multiple Sclerosis site is a great source of MS Information including Famous People with MS. And, MS Terminology.

This group was created to give Mums and Dads who are affected by Multiple Sclerosis (who have children of toddler age) a place where they can meet other Mums and Dads with M.S.

The group meets at the Vassalls Center in Fishponds (Gill Avenue).

" Come rub noses!!"

Eskimos is a new informal group based in Bristol / Bath area, offering simply friendship andd support to each other - help for survival in the arctic world of MS!. There are several Eskimos so far, with friendships building, both independently and as a group.

Would you like to get in touch, just to make friends with someone who understands how life can be for you?

Drop us a line to eskimoclub@yahoo.co.uk

Our meetings offer us the opportunity to meet others in the same position as ourselves.

We share coffee and a chat and a session of yoga, which most of us find remarkably beneficial.

A therapist provides reflexology, head and shoulder massage and reiki once a month.

We now have a fitness trainer who has experience of working with people with MS and other critical illnesses. She understands our varying needs and limitations and is able to help us at one session a month.

Email: mssupport@virginmedia.com

Website: http://www.mssupport.org.uk

JEMS is a new support group for Jewish people with MS.

They meet on the first Wednesday of every month at 8p.m. at Jack Block House, Rectory Lane, Edgware HA8 7LT.

It is really informal and friendly - just a good place to chat and share
ideas and discuss any issues you may have.

To date they have had a few guest speakers - e.g. a physiotherapist, an expert on fatigue.

Please visit Jooly's Joint and join her wonderful Carepal list to get in touch with other families which have people affected by MS. 

LWL is a UK based MS organisation and is the brainchild of an inquisitive MSer who realised the needs of specific communities of MSers where care, support and positivity are the key (and only) messages.

There is an abundance of information out there online with regards to MS.

When I was initially diagnosed I found the major MS websites invaluable as a source of advice and further reading.

After a time as an active contributor on various MS related social networks I personally felt the need for a more specific community to interact with, free from external spammers, people selling stuff, ranters and basically any  negativity. I decided to set up my own MS based Facebook Group to enable likeminded individuals to chat, share, support and most importantly laugh with each other. I thought maybe there were 2 or 3 other individuals out there, 4 or 5 even that I could connect with and who also felt the need to be part of a similar group.

In actual fact I have been blown away by the response and LWL, still its infancy, has attracted over 500 members and counting! The group has grown organically through its members and we are now excited to launch our very own website (www.ladieswithlesions.co.uk)  as well as a national meeting structure the first of which took place in Birmingham earlier this year and went FANTASTICALLY!!! Our page is moderated by a team of wonderful admin, who are on hand to welcome new members, be there for the existing members, and to ensure the page stays a friendly, inviting and fun place.

We also started up Living With Lesions for the other halfs, friends and family members of MSers, as we recognize that they too sometimes need support. Li’l LWLers is for the kids of MSers, and they have competitions and their own meets organized! Lastly there’s MiSters & Ladies with Lesions Togevver, for the men and women with MS .

We have a little saying in LWL – Chin Up Tits Out….and we all live by this mantra. Be prepared to be bowled over by the positivity, strength of character and support that emanates from this group!

Be well!

Tanya Downs (Founder of LWL)

Website : http://www.ladieswithlesions.co.uk

This website is the worldwide gateway to Low Dose Naltrexone information, resources and events.  LDN Aware is a volunteer group devoted entirely to spreading knowledge and raising public awareness about LDN as a treatment for auto-immune disease, cancer and HIV/AIDS.

Website: http://www.ldnaware.org/

MSRC are proud to have close links with all therapy centres in the UK and the MS National Therapy Centres (MSNTC) is the largest grouping.

 If you haven't visited your local centre yet - now is the time.

Full details of each MS Therapy Centre can be found on our MS Therapy Centres (UK and Ireland) page.

Website: MS National Therapy Centres (MSNTC)

"Gather and share Multiple Sclerosis information".

A very good MS resource site with links to MSlog.com which points to topical MS internet news stories, and Painlog.com which links to news stories about chronic pain.

The site also links to MS WebCasts and has some great inspirational stories.

 MS Outreach is written by patients with Relapsing Remitting Multiple Sclerosis (RR-MS). 

Their mission is to address the needs of the newly diagnosed and to provide accurate information about Multiple Sclerosis in PLAIN ENGLISH. Check it out!

The Multiple Sclerosis Research and Relief Fund is a UK registered charity (No.228634) established in 1964 to support people affected by multiple sclerosis (or MS), a disease of the central nervous system, which can affect a persons mobility, their independence and their confidence, and can also the change the lives of their partners, families and friends.

Based in Morpeth, Northumberland, MS Research and Relief Fund aims to provide good quality information and a range of services to help people whose lives have been affected by MS to understand and cope with the condition.

I would like to inform you of a Young Persons group I have created, for those in the 18 - 40 age bracket, living within the Plymouth & Liskeard district.

We meet on the first wednesday of each month, at 7pm in The Waterfront, Plymouth, Devon.

It's a chance to meet other young people whose lives have been touched by Multiple Sclerosis, in a friendly and relaxed environment. It's purely a social event! You don't even have to talk about MS if you don't want to!

Kind regards

Jessica Hole
jessicahole@hotmail.co.uk

The Angus Branch has been in existence for over 30 years.  Our branch covers the Counties of Angus and Kincardineshire.

Website: http://www.msangusbranch.co.uk/

Locally the Aberdeen Branch is there to provide information, support and practical help for people with MS and their families. As needs and circumstances vary, a range of services is offered so that people can choose what is right for them.

The knowledge that these services are readily accessible is in itself a support. The branch is run entirely by volunteers some of whom have MS.

The MS Trust is a one of the UK charities for people with multiple sclerosis, their families and friends and for all health professionals who work with them. The MS Trust funds information provision, education programmes for health professionals and research focussed on helping people to live with multiple sclerosis. 

It is a  National charity that grew out of the movement that was ARMS (Action and Research for MS),  as did the MSRC.

"Nurses involved in infection control, palliative care, rheumatology disorders or multiple sclerosis - those posts are being identified as at risk of redundancy and removed in order to help hospitals achieve financial balance."

"For a lot of people neurology has been a Cinderella service, and people with MS have often been Cinderella's within that Cinderella service."

The MS Nurses Support and Campaign Website is helping to publicise these worrying developments where whole swathes of people with MS may be left without specialist MS Nurse Support due to government and NHS financial mismanagement.

Mid Argyll, formerly known as Mid Argyll Friends of ARMS (Action and Research on Multiple Sclerosis) was established in 1992 through the efforts of a group of people with MS, and their carers. They raised funds locally by staging community events and were able to build a therapy centre in 1996, providing a vital link in care in the community between the voluntary sector and the consumers at whom this care is directed.

A major driving force behind this initiative is the fact that Mid Argyll has an extremely high incidence of people with Multiple Sclerosis, on average in the UK, one in 700 people has MS, yet in Mid Argyll this rate is one in 300.

We aim to promote a proactive approach to living with MS, focusing on what our members with MS are able to do. Activities include yoga, Dance, Movement Therapy and a range of exercise machines. We also offer supportive listening, up to date and relevant information and a range of therapies including physiotherapy, hyperbaric oxygen therapy and massage in a fully accessible, comfortable and friendly environment.

We are open to all and provide much needed community resources such as a weekly coffee morning, quilt making group and games afternoon for the elderly in our community.

Website: http://www.mstherapycentres.org.uk/centre_lochgilphead.htm

Facebook page: http://www.facebook.com/profile.php?id=100000884700659

What's On 

The Centre is open Monday to Friday 9am - 5pm  for HBO Therapy, advice and support.

Telephone:-  01546 606303       Email:- msargyll@btconnect.com

Monday
Massage – 1-9pm
Dance Therapy 1-2 pm

Tuesday
Coffee Morning 10-12pm
Physiotherapy 10-1pm
Quilters 1.30-3.30

Wednesday
Osteopathy 10-5pm

Friday
Yoga 12-1:30
Friday games 2-4pm

Hyperbaric Oxygen Therapy
Sessions available Mon-Fri 9-3
Plus Mon evening 7pm

Information and sources of support for people with MS (and carers, family and friends) living in Moray, North East Scotland.

'By people with MS for people with MS'

Email: alanbeevers@gmail.com

Website: http://www.msmoray.net/

Our Groups

We supply food to all, in the form of a buffet,  in order that no one has any money worries, we do not supply transport!
 
YUMS for those 'young at heart' ages vary from 20's to 60's we generally have an average of 12 people attend every week.

Location: Kings Fairway, Ashford, Middlesex, TW15 2SS

Meeting Dates: We meet on the following dates : 7th March / 4th April / 2nd May / 6th June / 4th July / 1st Aug / 5th Sept / 3rd Oct / 7th Nov     2009
 
HARRY's Place
 
A club we started for those that are less able, but all are included we generally have an average of 15 attending this club.
 
Location: Hazelwood Golf Centre. Address, Hazelwood Golf Centre, Croysdale Avenue, Sunbury-on-Thames TW16 6QU. Telephone, 01932 770932
 
Meeting dates for the rest of 2009: 19th Mar / 14th April / 21st May / 18th June / 16th July / 20th Aug / 17th Sept / 15th Oct / 19th Nov

News
 
What a fantastic week!
 
We had 17 attendees at YUMS on Saturday 14th Feb. 
 
Better still we had 24 attendees at Harry's Place today 14 of whom had MS. It was lovely to see  Anne Gilham today and so many others including Sarah, Fri Club helper.
 
It would appear that we are giving what many people want, we had two new members attend on Saturday who will be coming back.
 
I would like to ask all if anyone would be interested in becoming involved with Fundraising as we hold so many events and need to keep the money coming in, Sharron has unfortunately had a few issues to deal with and doesn't think she can give us the support we need and we need to start bringing in funds ASAP ...  Sharron is prepared to help and meet with those that may be interested. Please let myself and Chris know if you are interested! We really do need help in this area to enable us to continue with what we do.
 
Hope you've received your letter re 6 x Reflexology in your house at a cost of £12.50 to you the individual and the Branch will cover the extra, contact Chris if you are interested this offer is to the first 10 people that apply. Don't forget you can have any treatment Melody provides within the stated price bracket.
 
Chris would also like ideas for any trips you may be interested in going on this year. The Branch will be subsidising all trips!
Christine Lynch 01932 569320
 
Tracy will be notifying all of the next Lunch with Trace in the coming weeks.
 
Chris is also trying to set up a date for those interested in going along to White lodge in Chertsey to view their facilities please do contact her if you are interested, The Branch will pay for your lunch in the cafeteria The Rendezvous on the day of the visit, open to all members and carers.
 
I will be running my 'loose end' lunches on an ad hoc  basis whereby we ask the individuals to contribute £5 and pay for drinks the Branch will cover the excess for food only. So if at a loose end on a Saturday watch this space!
 
Please remember that several individuals have been asked to take others out for coffee & a slice of cake also going to the pictures, it would help if people had a pass card to enable carers to get in free.
 
Who can take you out?
 
Any Committee member
Lisa Collins
Iris
Anne Gilham
Melody
Janice Barrett
Sue Shortland
I'm sure I've forgotten someone?
 
look forward to hearing from you soon
 

best wishes
 
Steve

For more information please contact the Support Officers:

Christine Lynch -  Tel. 01932 569320

Steve Mills -  e mail: SteveMills277501@aol.com

Stockton MS Group have been in existence since 1993, a registered independent charity which provides a local focus for people affected by MS.

We offer practical help and social interactions (drop in, social events) that would not otherwise exist.

Please see our new website at http://www.stocktonmsgroup.org.uk

The largest national MS charity in the UK. Visit their site to find out more. 

We have two venues where we  meet, We hold a monthly meeting at the Stranton Centre, Westmoreland Street, Hartlepool and a weekly drop-in at the Owton Rossmere Resource Centre, Wynyard Road, Hartlepool.

Anyone interested can contact us on 07835264538 alternatively through e-mail at hartlepoolmsgroup@gmail.com

You can find us on facebook at The New Hartlepool MS Support Group

The group is primarily for people in Hartlepool and the surrounding areas affected by Multiple Sclerosis.

The monthly meeting is held on the first Monday of every month (excluding bank holidays) the meetings alternate between a social evening and an evening with a guest speaker usually relating to health issues specific to MS.

We provide a monthly newsletter and the group meets once a month for a social evening and a meal.

The drop-in is held every Monday (excluding bank holidays) from 11am until 3pm where people can access complementary therapies and counselling sessions.

Dear MSRC

I have been a member of the MSRC for quite a long time and always been an advocate of your magazine and the liberated way you look at all new treatments, drugs, complementary therapies etc.

Since March I joined the local branch of the Multiple Sclerosis Society just as a volunteer. I am now the welfare support officer, the membership secretary and the branch secretary of the South East Kent Branch.

In my MS Support Officer role I am available to help and visit anyone with MS regardless if they are members of the MSS or not. I am fully CRB checked. I have started an MS "surgery" at a local Government one stop shop in Ashford once a week on a Weds from 12 - 2pm and on the last Sat of the month from 9am-12pm.and I am on the committee of a young persons group we are trying to establish in a joint effort between the MS Society, the MS Nurses, OT and other young people like myself, affected by MS. There are many more objectives in the pipeline for all those with MS including a working partnership with a local gym, OT and the MS Nurse for an MS and neurological clinic, for rehab, to work alongside the SIPS programme.

We are making many changes and improvements. With the MS Nurse posts under threat here our local presence for the MS community may become even more vital.

I want your members to be able to benefit from the improvements we are making for the MS communities within S E Kent. Could you publicise some of my breakthroughs for those with MS? The most important of these is as follows:

I am delighted to inform you of a Young Peoples Group Meeting that has been arranged for a gathering of young(ish) people affected by MS to be held on Tuesday 3 October at 7.30 pm at Eastwell Manor, Eastwell Park, Boughton Lees, Ashford, Kent TN25 4HR. The room and drinks for the evening have been donated by Eastwell Manor and places can be reserved by contacting me jwhite@mssociety.org.uk or Jo Jones on 0845 397 0543.

The purpose of the evening is for people to get to know one another and decide on how they would like the group to develop. There will be a prize for the person who comes up with a winning name for the Group and a raffle with a Spa Day for 2 at Eastwell Manor value £300 as it's top prize. It is hoped to be a fun and friendly evening.

So far people from Ashford, Canterbury, Dartford, Sheppey and Thanet are involved and keen to get things off the ground but they need the word to spread.

Joanne Jones