Transcript Document

May 2012 Newsletter
Multiple Sclerosis Society of Jersey
Update from your New chairman
Dear Members and Friends,
I am delighted to welcome you to our new look newsletter and
to introduce our new committee as well as our key objectives
for the coming year.
Firstly, our great thanks go to Danielle Sowden who has chaired
the committee for the last three years. Danielle gave a great
parting address at the recent AGM in which she reported the
huge array of highlights from the last 12 months. Danielle paid
particular thanks to Suzie Maclagan who has also stepped down
from the committee after many years of service.
Our sincere thanks go to the other committee members who
have stepped down recently. Their contributions are greatly
appreciated.
Our new committee of nine includes eight new faces with Nicola
Bennett providing continuity. We have included photos and
mini biographies as a means of introducing ourselves. In
particular, Jo Newbold as secretary and Adrian Murphy as
Treasurer have already contributed enormously to the
organisation and financial management of the society’s affairs.
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
The society is in a strong financial position which will allow us to
firmly establish and extend our Outreach programme and to
improve the range of complimentary therapies available to all
MS sufferers in Jersey. These are key areas of focus and we look
forward to reporting on progress over the coming months.
Our other key areas of focus for the next 12 months are:
• Organising social events and support for our members;
• Fundraising through events and via donations;
• Raising the profile of MS within the community and the
States of Jersey;
• Developing strong relationships with the health service and
other charities supporting MS sufferers in Jersey;
• Simplifying and increasing our financial assistance activities;
• As funds will allow, we will continue to support the research
projects being funded by our MS UK cousins.
It leaves me to say that it was a pleasure to meet many of you at
the Cambridge project event and the AGM. I hope that I can
meet many more of you at the upcoming events we are
organising.
Best regards
Peter
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
OFFICERS:
Chairman: Peter Rioda
I am married to Alex Rioda who is also on the committee and has MS.
I am fully aware of the challenges that living with MS present, and
would like to help others with MS in Jersey. I am excited about what
we can achieve over the next year and look forward to working on
your behalf. Please feel free to call or email me with your ideas and
comments.
(Mobile: 07700 847423 Email: [email protected])
TREASURER: Adrian Murphy
Hello all – Whilst not directly affected by MS myself or through family
members, I was delighted to be able to act as Hon Treasurer for the
Society for the next year. Having been asked to step into the role late
last year I have learned a significant amount about the condition and
its effect on people. I have been impressed with the work that the
local Society has done to further enhance the lives of members
locally whilst also contributing to the wider cause of searching for a
cure for MS. I hope that I will be able to further contribute to the
positive work the society has done thus far.
(Mobile: 07797 763515 Email: [email protected])
SECRETARY: Jo Newbold
Hi there, like Adrian I had not been affected by MS or know of
anyone who had MS until I met Nicola and Alex, who then persuaded
me to join the Committee last October 2011. I am good at organising
people and events and like a challenge! I am now also part of the
Outreach team, a new initiative started by Alex Rioda and which has
already helped several members. Please see further in the
Newsletter about this great team. I will do my best to serve you all to
the best of my ability and look forward to putting faces to names.
(Mobile: 07770 625516 Email: [email protected])
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
Committee Members:
Nicola Bennett
Hi, I have been on the committee for four years and previously l was
on for about 8. I have two children, Susan (6) and Robert (13
months). I am a lawyer but don't work and am on the committee to
help, in so far as I am able, other MSers to get the most out of their
lives
(Mobile: 07797 842089 Email: [email protected])
Mark Cobden
Hello all I have decided to join the committee as I have a history with
MS. My father Paul has the condition and I work very closely with
him in helping him stay independent but am there for him if he needs
help and advice.
I am a Health Care Assistant and currently work in mental health. I
started my career in health care working for Jersey Cheshire Home
for 3.5 years so I have seen variations in the condition of MS. I am
one of these people that is happy to be contacted if people need
help and advice. I have a passion with Carriage driving and helping
people.
(Mobile: 07797 820410 email: [email protected])
Tori Ducker
Hi I am a 21 year old law student and Zumba instructor with a passion
for helping people. My mum has had MS for 12 years, so the condition
has been a very prominent part of my life. It is now my aim to find as
many ways to help those affected by MS, not just those with the
condition, but your children as well, and as such, Mark and myself are
busily working on a group called ‘MateS’ which will soon be available for
anyone 21 and under who wants to meet other people who understand
the ups and downs. I have a knack for fundraising, and will continue to
organise events such as the successful pub crawl in April, and the
upcoming Zumbathon.
(Mobile: 07797 838601 Email: [email protected])
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
Committee Members:
Karen Eeles
Hello, my mum is a MS Suffer and I have been on the committee
since January 2012. The reason I joined is to help promote
awareness of MS in Jersey and to support and promote the services
we can provide to you, our members.
I would like to encourage more members to enjoy complementary
therapies especially as the society has received a donation
specifically for this purpose..
I am also looking to facilitate the distribution and collection of the
MS collection boxes around the island. Anyone who has any
placement suggestions or would like to help please contact me.
(Tel: 855550 Email: [email protected])
Margaret McKeegan
Hello, I am an MS Suffer and would like to help and support fellow
MS suffers. Having the condition helps to be able to understand the
needs of the members and to identify where support can be given.
I would like to motivate members to take up the weekly keep fit
classes to keep themselves active and for there to be more
awareness of what the society can do for them. I would also like to
encourage members to consider taking up the offer of
complementary therapies.
(Tel: 858889 Email: [email protected])
Alex Rioda
Hi, I am a young(ish) mum with 10 year old twins and a 12 year old. I
was diagnosed two years ago. I believe that the MS community in
Jersey can really help and support each other. As such, we are setting
up an Outreach initiative to help all MSers in whatever way we can.
Please contact me if you would like to find out more.
(M: 07700 721429, E: [email protected])
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
Financial Assistance
We are in the process of trying to simplify the process for receiving
Financial Assistance as we are aware that the current system is rather
complicated and off-putting.
The existing form has now also been
removed from the website.
Whilst we are trying to implement the new process if you would like
financial assistance, please either contact the Outreach team on 07797
779903, where your call will be treated in the strictest confidence or put
your request in writing, outlining briefly what your request is about and
your contact details and send, in the strictest confidence, to our
Treasurer: Adrian Murphy, 114 Miladi Farm, Longueville Road, St Saviour,
JE2 7QQ.
Complimentary Therapies
In regards to the Complimentary therapies, this process will also be
simplified, however in the meantime if you would like a complimentary
therapy up to the value of £40 per month then please fill out and return
the enclosed form to Adrian our treasurer at the above address.
If you cannot access the form, please contact the Outreach team on
07797 779903 or Adrian our Treasurer on 07797 763515. We have also
attached a ‘Complimentary Therapy’ form for your convenience.
In all financial matters – only the Outreach Team leader or our Treasurer
will know the person’s name requesting the funds.
More details on the simplified process will be in the next Newsletter!
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
Cambridge Centre for Myelin Repair – Cheque donation of
£50,000 !!
A cheque for £50,000 was presented to Simon Gillespie, Chief Executive
of the UK MS Society specifically for Research at the Cambridge Centre
for Myelin Repair on Thursday 19th April at a special event at the
L’Horizon Hotel.
(Photo above from left is Adrian Murphy (Treasurer), Simon Gillespie,
Danielle Sowden (previous Chairman) and His Excellency the Lieutenant
Governor General Sir John McColl)
Simon gave a superb presentation, which included a video with Professor
Franklin who is leading the research at the Cambridge Centre. The
presentation was followed by a Q&A session and then members and
supporters got a chance to chat with Simon over drinks and a lovely hot
buffet.
Over a hundred members and guests attended the event and the
feedback from everyone was that they all had a great time and found the
presentation very interesting.
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
MS Awareness Week
This very important week in our calendar year kicked off with a team of
volunteers doing a fantastic job of Bag Packing at M&S food hall in St
Helier and raised a wapping £793.71. Well done team!
Nicola Bennett then attended the school
assembly at JCG Prep on Friday 4th May
where they had a ‘Dress Orange’ day.
Assisted by her daughter Susan, Nicola told
the pupils and staff a bit about MS and living
with the condition and they raised a
fabulous £380 and counting. Les Landes
also raised £100 with a ‘Dress Orange’ day.
Whilst Karen Eeles organised with EFG in the community to raise
£110.15 by selling cup cakes and football cards.
Tori Ducker also organised a Pub Crawl around St Helier with a small
team of helpers on Friday 13th April and raised a fabulous £988.18 as
well as organising a Dog Walk from St Helier to St Aubin on Sunday 15th
April and raised a £223.92, so a really big THANK YOU to Tori.
Susan Bennet’s ballet and zumbatomic teacher (Jennifer Seymour)
raised £300 with fancy dress dancing lessons and her 40th birthday
celebrations, so a huge thank you to Jennifer.
Last year Nicola was contacted by Cavell, one of the JCG houses about
their charity work. Since then they have done various fund raising
activities and at the end of March Nicola, together with representatives
of all the other house charities, went to a special assembly to collect
our cheque for £1,493.68 - as a whole JCG raised £15,500 for various
charities, so a huge Thank you to Cavell House and JCG!!
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
Other Major Donations received
A Huge THANK YOU to everyone who has sent the Society donations
over the last few months and who have done events to raise money for
us. Total amount year to date is £46,206 to end of April 2012, and
special thanks go to:
Jersey Funds Association Dinner
Soroptimist International (Jersey branch)
Waitrose
Royal St Martin
- £5,085
- £1,500
- £ 550
- £ 400
AGM
The AGM of the society was held on Saturday 12th May at the St Clement
Parish Hall, 24 people attended, which was a little disappointing . As a
Committee we want to ensure that what we do during the year is what
our members want and the AGM is your way of letting us know your
views. We all enjoyed Julie Shaw’s delicious cakes with tea following the
meeting and it was lovely to catch up with those that did attend – a
special thanks to Jacinta who came from Overdale having broken her
hip!
Old Stamps
Jacinta has asked that if anyone has any used stamps, especially foreign
ones, could they please send them to her. Her address is: 19 La
Cambrette, Le Squez Road, St Clement, JE2 6BA
Polish and Portuguese
For those who may wish to have further information in the Polish or
Portuguese language please use the links below to find information
provided by the following websites:
Poland:
www.emsp.org
Portuguese: www.spem.org
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
Health News . . .
The Importance of Vitamin D
Many of us believe in the link between Vitamin D deficiency and MS. At
the presentation evening held at the L’Horizon, Simon Gillespie, the CEO
of MS UK spoke about the link between Vitamin D and MS. The
following is taken from MS UK’s website:
New research finds rare gene linking vitamin D with MS
Published date: 08 Dec 2011
A study part-funded by the MS Society has identified that a gene that
causes vitamin D deficiency may also cause MS. Researchers at Oxford
University found a small group of people with a genetic vitamin D
deficiency which has a strong connection to MS.
There is growing evidence of a link between vitamin D and MS. We get
vitamin D when our skin is exposed to sunlight and also from some
dietary sources. Studies have established that the closer people live to
the equator the lower the risk of developing of MS, and sunlight is
strongly implicated as a cause.
What’s the study?
The researchers looked at people with MS who have a large number of
other cases of MS in their family. When the team studied their DNA, all
of the people they looked at had an unusual version of a gene called
CYP27B1. Importantly gene CYP27B1 controls vitamin D levels in the
body.
In a few very rare cases where people have inherited two copies of the
unusual version of the gene, these people were found to have a genetic
form of rickets caused by vitamin D deficiency as well as having MS.
These findings suggest a strong link in these individuals between vitamin
D deficiency and the development of MS.
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
Health News . . .
What does it mean for people with MS?
This research offers further support to a potential role for vitamin D
deficiency in MS and may also help to explain why some family's genes
put them at a higher risk of developing MS.
However, there is still much to learn about the causes of MS and, if
important, the role of vitamin D will only be a part of the puzzle. More
work is needed before we fully understand why some people develop
the condition and others don't.
Dr Doug Brown, Head of Biomedical Research at the MS Society, said:
"This is an important development and shines more light on the
potential role of vitamin D deficiency on increasing the risk of
developing MS. This research is gathering momentum and will be the
subject of discussion at an International Expert meeting in the USA this
month, the outcomes of which will shape future research that will give
us the answers we so desperately need about the potential risks and
benefit of vitamin D supplementation."
The study was published in the journal Annals of Neurology and was
also supported by funding from The Wellcome Trust.
End
Going forward we are hoping to offer all our members free
Vitamin D Supplements for a trial period. If you feel these
would benefit you please contact us on 07797 779903. Any
member, who wishes to take part, should speak to their Doctor
or Health Professional with regard to taking Vitamin D
Supplements. More information on potential benefits as well
as possible downsides is available on the MS UK website.
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
Outreach
As your committee, we are seeking to support you in whatever way you
need. This may be in a purely financial way but also in a social way, its up
to you. We are actively seeking to offer you practical support including:
• home visits
• light household duties
• handyman visits
• home cooked meals
• mobile hairdresser
• anything else that would help if we can organise it!
If you are more able, but appreciate the confidence of having someone
with you, we have volunteers who would like to take you out for a cup of
tea or to help fill your trolley or take you to any appointments.
NOTHING IS TOO SMALL TO ASK FOR – WE WANT TO HELP YOU!
CALL: 07797 779903
Please be aware that all requests, financial or otherwise are treated in
the strictest of confidence.
Other ways to get in touch with us are via the website which is
continually updated with new information on forthcoming events. The
address is www.msjersey.org
Via our email address: [email protected]
We are also on Facebook under ‘Friends of MS Jersey’ and on Twitter at
‘MSSocietyJerseyCI’.
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
Forthcoming Events . . . . .
Coffee Mornings
These monthly coffee mornings are a great way to get together and
have a chat. They are held on the last Saturday of every month at the
William Knot Centre at Overdale, 11am til 1pm. The following dates for
the coming months are: Saturday 26th May, Saturday 30th June and
Saturday 28th July. All are welcome!
Zumbathon . . .
On Saturday 16th June we have a very exciting opportunity for you. At
Hautlieu School from 1-4pm the Society is holding a Zumbathon and
Wellbeing event. The exciting part is that there will be Zumba Gold
standing and seated classes available to you, which will be available in
the dance studio whilst everyone else is going mad in the main hall, as
well as a host of different therapists, so for those of you who do not
already take advantage of therapies that the Society is committed to
fund, come on over to Hautlieu and see what is available.
The
therapists will be doing taster sessions so you can find out what you like
without all the hassle.
So come and find us if you want to try your hand at a new way to
exercise (Tori will be looking to continue with classes if you enjoy it), try
some therapies, or if you would just like to chat with us. We will also
have a stand full of MS information.
It is £5 for members, seniors and children, and £10 for adults, so bring
the family for a great afternoon of Zumba and Wellbeing fun.
Contact Tori Ducker for tickets: 01534 731415, 07797 838601,
[email protected], or just buy a ticket on the day
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
Forthcoming Events . . . . .
Diamond Jubilee Event at RJS
We need your time and assistance! The Committee decided that we
should have a presence at the RJA&HS Diamond Jubilee Fare which is
being held on Saturday 9th and Sunday 10 June. We are going to do
the Hook a Duck and Hoopla that we had at the Family Fun Day last
year. We therefore needs lots of volunteers to man the stall. I would
suggest two at any one time doing perhaps two hour slots. I have
requested chairs and a table. I have also requested that we have good
access to parking and toilet facilities and we are inside or under cover.
Please confirm to Nicola (639687) or Jo Newbold (510044) your
availability. THANK YOU!
Event in Reg’s Garden – Thursday 28th, Friday 29th and Saturday 30th
June
Nikki Marett-Gregory and her fabulous ‘Vocal Factor Club’ are putting on
their Summer Charity Concert in Reg’s Garden again this year on
Thursday 28th June, Friday 29th June and Saturday 30th June. The
concerts start at 7.30pm and you can bring a picnic and drinks to enjoy
prior to the start of the event, whilst tea and coffee will be served
throughout. Bring a warm wrap or blanket just in case the weather gets
cool!
Please come and support Nikki and her lovely Club. If you would like
help with transport please get in touch with Alex on 07797 779903.
May 2012 Newsletter
Multiple Sclerosis Society of Jersey
Forthcoming Events . . . . .
West Show . .
We have also been offered the opportunity to man the Hay Bale play
area at the West Show. The activity is free but we will be able to collect
donations for the Society. Further, for the first time ever, we have been
offered the chance to collect loose change at the exits as people are
leaving. We are looking for volunteers to give up one, two or three
hours of their time during the weekend to help raise awareness of MS
and to collect money for the Society. Please let me (Nicola (639687) or
Jo (510044) know if you can help at all. This event is on 7th and 8th
July.”
Harmony Men Concert
We are very pleased to say that the Harmony Men are putting on a
concert in Howard David Park on Thursday 12th July at 7pm and our
Society will receive all the funds raised at the event. If the weather is
inclement they will decamp to St Luke’s church so please come along
and support them.
2012 Jersey Half Marathon
We are very happy to report that Peter Rioda, our new Chairman, ran
the Jersey Half Marathon on Sunday 20th May in 1 hour 33mins, and
Steve Wilkinson, husband of Linda who has MS, ran it in 1 hour and 49
mins – amazing effort guys, well done! A few of us were there to cheer
them over the finishing line despite the awful weather – the orange Tshirts were great to help identify the guys.