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Multiple Sclerosis Society of Jersey May 2012 Newsletter Dear Members and Friends, I am delighted to welcome you to our new look newsletter and to introduce.

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Presentation on theme: "Multiple Sclerosis Society of Jersey May 2012 Newsletter Dear Members and Friends, I am delighted to welcome you to our new look newsletter and to introduce."— Presentation transcript:

1 Multiple Sclerosis Society of Jersey May 2012 Newsletter 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. Update from your New chairman

2 Multiple Sclerosis Society of Jersey May 2012 Newsletter 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

3 Multiple Sclerosis Society of Jersey May 2012 Newsletter 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: 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: 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: OFFICERS:

4 Multiple Sclerosis Society of Jersey May 2012 Newsletter 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: 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: 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:

5 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: Multiple Sclerosis Society of Jersey May 2012 Newsletter Committee Members: 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: 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:

6 Multiple Sclerosis Society of Jersey May 2012 Newsletter 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!

7 Multiple Sclerosis Society of Jersey May 2012 Newsletter 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 19 th 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.

8 Multiple Sclerosis Society of Jersey May 2012 Newsletter 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! 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 13 th April and raised a fabulous £988.18 as well as organising a Dog Walk from St Helier to St Aubin on Sunday 15 th 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!! Nicola Bennett then attended the school assembly at JCG Prep on Friday 4 th 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.

9 Multiple Sclerosis Society of Jersey May 2012 Newsletter 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: Portuguese: 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 AGM The AGM of the society was held on Saturday 12 th 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! 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 - £5,085 Soroptimist International (Jersey branch) - £1,500 Waitrose - £ 550 Royal St Martin - £ 400

10 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. Multiple Sclerosis Society of Jersey May 2012 Newsletter Health News...

11 Multiple Sclerosis Society of Jersey May 2012 Newsletter 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. Health News...

12 Multiple Sclerosis Society of Jersey May 2012 Newsletter 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 Via our email address: We are also on Facebook under ‘Friends of MS Jersey’ and on Twitter at ‘MSSocietyJerseyCI’.

13 Multiple Sclerosis Society of Jersey May 2012 Newsletter 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 26 th May, Saturday 30 th June and Saturday 28 th 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,, or just buy a ticket on the day

14 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 28 th, Friday 29 th and Saturday 30 th 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 28 th June, Friday 29 th June and Saturday 30 th 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. Multiple Sclerosis Society of Jersey May 2012 Newsletter Forthcoming Events.....

15 Multiple Sclerosis Society of Jersey May 2012 Newsletter 2012 Jersey Half Marathon We are very happy to report that Peter Rioda, our new Chairman, ran the Jersey Half Marathon on Sunday 20 th 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 T- shirts were great to help identify the guys. West Show.. Forthcoming Events..... Harmony Men Concert We are very pleased to say that the Harmony Men are putting on a concert in Howard David Park on Thursday 12 th 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. 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.”

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