Wednesday, 24 October 2012

Christmas Fayre - Request letter from our Link Group

Hello Everyone!

Christmas Fayre - 24th November 2012, 1pm to 3.30pm
Once again we are planning the Christmas Fayre and this year local MP Alok Sharma will perform the opening ceremony. As usual we are asking for your help. Please will you donate any of the following?

  • A prize for the raffle or tombola. Any new, unused items would be very welcome.
  • Soft Toys which can be used as prizes.
  • Wine for prizes in the Wine Raffle
  • Cakes to serve with tea and coffee on the day and for people to buy and take home.
  • Jewellery for our jewellery stall
PLEASE NOTE THAT WE DO NOT NEED BRIC-A-BRAC THIS TIME. WE HAVE SO MUCH THAT STORAGE IS BECOMING A PROBLEM!
There is a box under the desk in the reception area at the Centre into which donated items can be placed. Please give wine to Tracy or Jackie for safe keeping. Please bring cakes along on the day, or a day or two before. It would be helpful if cakes could have a label saying what they are and whether they contain nuts.
Other ways you can help
Are you or any of your family and friends available to help on the day? We need able-bodied people to help set up the tables from 9 am to 11 am. Also help is needed at the end of the day (dismantling tables and clearing up) from about 3pm to 5pm. If you or anyone you know could help with this (or in any other way) there will be a volunteers' form at the Centre for you to complete or please phone the Centre.
Please come along on the day with your friends and family. You will find lots of stalls with allsorts of things to buy and delicious cakes to eat in or take away. Tea, coffee and cold drinks will also be available and of course Santa will be there in his grotto.
Many thanks for your support and we look forward to seeing as many of you as possible at the Fayre.
Sue Smith
BMSTC Members' Link Group
 

Looking for answers about MS?

Photo: Looking for answers?  The MS Trust provides evidence-based, high quality, information for anyone affected by MS. All our publications are free and you can download them here
www.mstrust.org.uk/publications/publications-for-people-with-ms.jsp
Source MS Trust:

Looking for answers? The MS Trust provides evidence-based, high quality, information for anyone affected by MS. All our publications are free and you can download them here

New website launched to help with care planning

Source Find me good care:

There are many types of care and support. You can use our Good care planner to consider the options available and the outcomes you want. You can plan care for yourself or for someone else.  For more click here.

New Event - Endure 24!

Endure 24 is a new event taking place over the weekend of the 8th & 9th June 2013 and BMSTC are the official nominated charity!

Endure 24 is a twenty four hour race run over a 5 mile loop of woodland trails.  It takes place in the scenic Wasing Park Estate, Aldermaston near Reading.   Free camping, showers, 24 hour catering, enterntainment and beautiful surroundings give it an exciting festival feel.

BMSTC are looking for individuals or teams to particiapte and raise sponsorship for the Centre.  We also need volunteers to help marshall the event.  If you are interested in either, please contact Jackie on 0118 901 6000 or email jackie@bmstc.org

Move it for MS

Source MS Trust:

Move it for MS – these video clips on the MS Trust website have something for everyone as Mr Motivator covers getting the most from going to a gym and matching exercises to what you feel comfortable doing.  For more click here.

Spontaneous 'natural' improvements in MS

Source MS Trust:

New research shows about a quarter of people with MS experience naturally occurring periods of improvement in disability.  Read more here.

Wednesday, 17 October 2012

Universal Credit: Disabled people 'to lose out'

Source BBC:

Up to half a million disabled people and their families stand to lose out under the government's proposed Universal Credit, a report says.  Read more here.

Low earners miss out on fuel grants

Source the Independent:

Turn2Us has warned that as many as half the people eligible for help with fuel bills don't claim the benefits to which they are entitled.  Read more here.

Symptoms of MS

Photo: Symptoms of MS

MS can cause a wide variety of symptoms. No two people with MS experience the same symptoms.

Read more about some of them in the A to Z of MS - http://www.mstrust.org.uk/atoz/symptoms.jsp
Source MS Trust:

MS can cause a wide variety of symptoms. No two people with MS experience the same symptoms.

For more click here.

Reading West MP Alok Sharma to open Christmas Fayre!

The BMSTC Christmas Fayre will be officially opened by Reading West MP Alok Sharma on Saturday 24th November at 1.00 pm. Come along and buy your Christmas gifts and cards!

For more information please see our event page here.

Tuesday, 16 October 2012

The Miracle of one of our members!


Reported in a number of national press publications, this particular link is to the Independent.



"Jeremy Laurance on the miracle of the woman who came back from the dead – and why it matters for us all"

"I have shaken her hand, held her gaze and spent more than an hour chatting with Tasleem Rafiq and her children and I can report that she is no ghost. The 52-year-old mother of four is very much alive." Read more here.
 

Shaping the Future of Healthcare in East Berkshire

NHS LogoHave your say and help to shape future of health services in the community  in East Berkshire by taking part in this public consultation.  For more information click here.

Largest study on CCSVI and multiple sclerosis reports back

Source MS Society:

Results of the largest blinded study on CCSVI to date have been announced.  The study looked at the prevalence of CCSVI in 1165 people with MS, 376 people without MS and 226 people with other neurological conditions.  Read more here. 

Availability of alemtuzumab

Source MS Trust:

Alemtuzumab is an experimental drug treatment for people with relapsing remitting multiple sclerosis that is currently going through the licensing process with the European Medicines Agency (EMA) and the Federal Drug Administration (FDA) in the US. If approved, it is expected to be marketed under the name Lemtrada.  Read more here.

MS trial to explore vitamin D links

Source abc.net

A world-first clinical trial beginning in Hobart today will assess if vitamin D can stall or prevent the development of multiple sclerosis (MS).  Read more here.

Monday, 15 October 2012

Electronic prescription service

Source NHS Berkshire Health Network News:

EPS is a new service for patients who regularly receive repeat prescriptions from their GP.

Read more here.

Get the Jab, Get Flu Safe

Flu_2012_promo
Source NHS Berkshire Health Network News:

If you have a long term condition you are more at risk if you get flu and should be vaccinated against it.

Read more here.

Cannabis-based pill can improve muscle stiffness in MS


Source MS Society:
 
Researchers announced that a pill containing the cannabis extract, tetrahydrocannabinol (or THC), improved muscle stiffness in people with MS.  
 
Read more here.

Researchers announced they have found a treatment that might slow the progression of MS in people in the later stages of the condition.

Source MS Society:

Researchers announced today they have found a treatment that might slow the progression of MS in people in the later stages of the condition.
In one of the first positive clinical trials for progressive MS, simvastatin – a cholesterol lowering drug – was found to potentially benefit people with secondary progressive MS (SPMS).

Read more here. 

News from ECTRIMS - a major conference on treatment and research in MS

Source MS Trust:

A range of blogs, videos, updates and analyses are available online

This week (October 10-13), ECTRIMS (European Committee for Treatment and Research In Multiple Sclerosis) is holding its annual conference in Lyon, France. ECTRIMS 2012 is bringing together over 7000 clinicians and scientists to share research findings in MS at this week’s meeting . The ECTRIMS annual conference is the largest annual international conference devoted to basic and clinical research in multiple sclerosis.

Read more here.

Exclusive: MS drug 'rebranded' – at up to 20 times the price

Source The Independent:

A pharmaceutical company stands accused of putting profit before patients after withdrawing a drug used in the treatment of a chronic debilitating disease – ahead of relaunching it at a price predicted to be up to 20 times higher.

Read more here.

Interview: George Pepper (Shift MS)

Source MS Society:

George Pepper was 22 when diagnosed with MS. In the first 15 months after his diagnosis George experienced seven relapses. Following this crash course in the condition, George created the social networkShift.msto allow young MSers to meet.

Read more here.

Please collect tokens for BMSTC!

Last week  the Reading Post is launched their 'Make A Wish 12' campaign which means they have £15,000 to give away to local good causes, which includes the Berkshire MS Therapy Centre!

They will be printing tokens in the paper for you to collect and put in a box  that is available on the Centre's reception desk. This Wednesday they are putting 20 tokens inside rather than the normal 4.
To find out more please email Kirsten@bmstc.org or log onto www.getreading.co.uk/wish

Wednesday, 10 October 2012

Gene could be used to treat MS

Source Irish Times:
NEW TREATMENTS for multiple sclerosis (MS) and other auto-immune diseases could flow from an important discovery made by scientists at NUI Maynooth.

They were trying to understand the role of a gene called Pellino3 and how it comes into play when a person develops a viral infection. Read more here.

Fingers crossed at AIIMS after stem cell transplant for MS, first in country

Source Financial Express:
New Delhi: Doctors at the All India Institute of Medical Sciences (AIIMS) have conducted a stem cell transplant on a multiple sclerosis (MS) patient. They believe this is the first recorded case of an autologous stem cell therapy — where the donor and recipient are the same person — for MS in the country.  Read more here.

Doctors say more MRI scanners would help MS patients

Source BBC:
Around 2,500 people are diagnosed with MS every year with about half of those thought to be between 18 and 30.

The MS Society says it has noticed an increase in calls to its help-line from people worried about symptoms of the disease.  Read more here.

MS Trust Research: funding pioneering stem cell research in Bristol

Source MS Trust:

Help improve the lives of people with progressive MS

The MS Trust has recently invested in research to find a successful treatment for progressive MS. In this video Claire Rice, Lead Researcher, gives more information about the bone marrow stem cell study. We believe this offers real hope for the future, but we also understand that people living with progressive MS now need the highest levels of care and support to ensure that they have the best quality of life possible.  Watch here.

Botox licensed as a bladder treatment for MS

Source MS Society:

Botulinum toxin (known as Botox) has been licensed by the MHRA to treat people with neurogenic detrusor overactivity (or overactive bladder symptomhttp://www.mssociety.org.uk/ms-news/2012/09/botox-licensed-bladder-treatment-mss), commonly experienced in people with MS.  Read more here.  

Short film about living with MS

Source Shift MS:

View a short film on different experiences of people living with MS.  Watch here.

Anyone know a graphic designer?

Anyone out there know a graphic designer who can help us create a new template for our newsletter using Adobe InDesign CS6?  We are trying to update and refresh our newsletter.

If so please can you let me have their contact details to see if they can help, or ask if they can contact Pippa on 0118 901 6000 or email pippa@bmstc.org Thank you :0)

Tuesday, 9 October 2012

Insoles for improving balance


Did you see our post about the MEDICOVI insoles in September? We still have one pair left in size 9-10, so if you are interested contact Henriette 0118901600 or Henrietta@bmstc.org

Tuesday, 2 October 2012

Tuesday evening Physio - would you be interested?


The physio team are trying to gauge how many people would be keen to join a physio class on a Tuesday evening, possible time from 6-7pm.

This would be offered primarily for those who are working but who wish to work on core stability and posture, higher level balance activities, general fitness exercise appropriate for PWMS.

If you want to know more or join such a class, please contact Ruth at ruth@bmstc.org or call BMSTC 0118 9016000

Grow your Tenner Campaign!

Thank you to everyone who has donated so far, we've raised just just over £700 to date from this appeal! 

The Grow Your Tenner Campaign is still running,  donate £10 and Local Giving will match your £10 to your chosen charity (which we hope is BMSTC of course ;0) 

https://localgiving.com/charity/bmstc

Frances Longman completes Coast to Coast Cycle!

Our volunteer Massage Therapist, Frances Longman, has completed the Coast to Coast Cycle to raise money for BMSTC!

"Last year I cycled 233 miles from Newcastle to Edinburgh, together with a bunch of other crazy women. Some are friends from school, some I had not even meet previously. We were in it for fun, fitness, and fundraising. I published an online account of that, which you can read in the Archive.
route map
This year I participated in another outing: a "coast to coast" ride from Carlisle to South Shields, a distance of over 180 miles that includes a major challenge in the shape of the Pennines.

As well as the personal challenge, I'm using this as an opportunity to raise funds for the Berkshire MS Therapy Centre. (See the Sponsorship page for details.)"

Read more here!

Spasms and stiffness

Source MS Society:

Are there specific triggers for your tremors or spasms? How you cope with them? Do you use medication, diet, exercise or alternative therapies?   Read more here.

L'hermitte's sign or L'hermitte's syndrome is a sudden sensation resembling an electric shock

Source MS Trust:

L'hermitte's sign is a symptom of multiple sclerosis in which an electric shock pain passes down the back. From the MS Trust's A to Z of MS.  Read more here.
 

MS Awards - Stephanie Millward - Inspiration of the Year 2012

Source MS Society:
Paralympics GB Swimmer Stephanie Millward is the winner of the MS Inspiration of the Year 2012. Stephanie won 5 medals at the London 2012 Paralympics -- including 4 silvers. She broke the 100m backstroke British record when she was 15 and hoped to qualify for the 2000 Olympics before she was diagnosed with MS at the age of 17.

Despite her diagnosis, Stephanie continued to pursue her dream of becoming a successful swimmer. She competed at the Beijing Paralympics and has also swum at other events around the world.  Watch here.

Congratulations to the new Chilterns MS Therapy Centre!

Source BBC:

David Jason, Patron of the Chilterns MS Therapy Centre performs the official opening ceremony of their new Centre.  Watch here!