Latest news, resources and events
What's going on locally and nationally? Services and resources that keep you in the loop? Got anything you'd like to share? Email us and we'll add it here.
August 2010: JK Rowling donates £10 million for MS research
Harry Potter author JK Rowling has given £10 million to set up the Anne Rowling Rgenerative Neurology Clinic. This clinic is named after her mother who had MS. It will work on finding treatments to slow and reverse the gradual effects of MS.
The clinic will also look into treatments for other conditions like Parkinson's and motor neurone disease. It will be based in the Edinburgh Centre for Translational Research, which the MS Society has supported since 2006.
Chief Executive of the MS Society, Simon Gillespie said: "The funding announced by J K Rowling is great news for people affected by MS."
Event: Telephone Support Groups for Parents
Would your parents like to join a Telephone Support Group on Monday 20th September at 7.30pm-9pm?
The Support Group is an opportunity for parents (who have a child or teenager with MS - up to the age of 19) to chat about any issues that they would like to share with other parents, The Telephone Support Group is free of charge for UK participants only and it will be facilitated by a volunteer.
If your parents are interested, get them to contact firstname.lastname@example.org or 0208 438 0812 with their name, telephone number (ideally a landline number for the support group), email address and the age of any children. Further details will be sent to them shortly.
August 2010: Fun was had at Childhood MS Day in July.
The MS Society organised a Childhood MS family day in July at Drayton Manor theme park in Tamworth. The day was an opportunity for 8 families to meet up, chat about different subjects and to have a fun time enjoying the theme park rides and the zoo!
August 2010: New guidelines for treating MS in under-16s.
10 August 2010
Experts have written new guidelines for doctors, nurses and other professionals, so they know more about children's MS and how they can treat it.
The guidelines recommend:
- the best ways to manage relapses
- how and when disease modifying drugs should be used
- a way forward for treatment in the future
Dr Evangeline Wassmer, who helped write the guidelines, said "There is a real lack of awareness of childhood MS in the UK among health care professionals. These guidelines will give them tailored information about the specific issues that children with MS face and how best to deal with those issues."
Dr Wassmer and the MS Society are now considering the best ways to keep health care professionals up to date with childhood MS.
August 2010: New Facebook support page for families with kids with MS
We have a new Facebook page for families where there is a child with MS. The page is a place for mailies to chat, support each other and share information. Please become a fan, and if you have childhood MS in the family, come and say hello.
March 2010: New event announced for kids and teens with MS
There's an event being held at Drayton Manor Park and Zoo for children and teens affected by MS. It will be held on Saturday July 17 and you can call the MS Society conference team on 020 8438 0941/ 0837 or email them to find out more.
March 2010: Oritse a hit with MS carers
Young carers from the MS Society Northern Ireland met JLS member Oritse Williams before the band's final performance at the Waterfront Hall in Belfast. We're sure Oritse was his usual charming self! You might follow JLS on Twitter - maybe you'd like to follow us too!
News: Oritse Williams from JLS on being a young carer
Oritse's mother was diagnosed when he was 12, in this video he answers some questions from young people coping with similar situations - Thanks Oritse!
Headliners is a UK-wide news agency producing news, features and comment by young people for everyone.
Through a unique learning through journalism programme, young people aged 8 to 19 research and write stories on issues that are important to them for publication in national and local newspapers, magazines, television and radio.
News: Are you a teenager with a parent who has MS?
Researchers at the University of Southampton want to know how teenagers adjust to their parents’ MS. All you have to do is complete a few questionnaires related to MS and your well-being. They will ask families to complete the same set of questionnaires at 2 times 6 months apart. The completion of the questionnaires may take approximately 20 to 30 minutes. The results will be used to help the researchers understand teenagers' adjustment to help support teenagers with a parent with MS in the future. The study will also be written up for publication in scientific journals and may be presented at scientific conferences.For more information and to find out how you can get involved.
Resource: Youth Health Talk website
This is a website about young people’s real life experiences of health and lifestyle. This is not just a website about the medical facts, this is about real people and real lives. Watch, listen and read young people talking about their experiences. There are also forums to chat to others about your experiences.
Resource: Yoobot re-launch from the British Heart Foundation
Gunter Von Gunter's latest work of genius is unveiled! The new, very much improved Yoobot Hatch'o'matic machine is ready and fully operational.Be the first to make yourself into a farting, greedy robot with health issues.
Resource: Teens first for health website
There's a really good new website for teens called Teens first for health by Great Ormond Street Hospital.It has an A to Z of conditions, a Dear Doctor section, information on healthy eating, podcasts, features and loads more. It's well worth a look.Check it out here.
News: I signed up - The youngest MS Society chair.
At just 18, Sheree Heptinstall has become the chairwoman of the Halifax and Calderdale branch of the MS Society. The teenager from Sowerby Bridge has been raising awareness about MS since her mother Shirley Helliwell was diagnosed nine years ago.Read her story and see how you can get involved.
News: Do you want to help other young people by running workshops?
The Staying Positive programme was developed after talking to teenagers about how they would like the format and what workshops should cover. This included the importance of people their own age running the workshops.
Stuff that gets talked about:
- Communication with family, friends and healthcare professionals
- Socialising and friendships
- Taking your medication
- School, careers and the future
- Feeling down and depressed
- Sex, drugs and alcohol for the older participants, and issues of puberty for the younger participants.
You'll get all the training and support you need and get a certificate of achievement after completing your first set of workshops. You'll also get £40 for each workshop you deliver after that. There is help with travel costs and arrangements to and from the training venue. Training happens on Friday 23rd– Monday 26th October 2009, Trafford Hall, Chester
For more information call Cathy McMahon, Project Manager on 01225 731326 or Jo Langley on 01225 731324 or email email@example.comRead all about it and see how you can get involved.
Resource: BBC news for kids and teens
News site live now
The BBC has launched a major new website, providing news for children every day of the year.
It is the first site in the world to have daily news coverage created specially for a young audience. CBBC Newsround Online is designed for children aged 8 to 14, with stories created in seven categories: UK, World, Sport, Music, TV/Film, Animals and Sci/Tech.
News: Want to be in a film about young people and MS?
Want to take part in a project with the BBC? Voices for young people with MS will be a short film about MS to help show that there's life after MS and you are needed to take part and share your stories. Whether they're amusing, inspiring, interesting, well, anything, we want to hear them. For the camera shy, you don't need to appear on screen as there are plenty of roles to take place backstage, but they do need your stories.See how you can get involved.
News: Blood test may predict course of MS
Scientists have discovered a blood test that could predict the course of multiple sclerosis (MS), or even indicate who is likely to develop the condition after a first MS-like attack.
The results of the study suggest that differing antibody levels produced in response to the common virus Epstein Barr Virus (EBV), may predict the course of MS. Dr Susan Kohlhaas, Research Communications Officer at the MS Society, said: ‘We’re delighted that such an interesting study has produced these valuable results that will give scientists a new avenue of MS research to explore. Identifying biomarkers of MS is a key area of research and this work is a stepping stone on the path to mapping out the course of the condition and potentially determining prognosis.’Read more on this, and other research stories in Research News
News: JLS hearthrob talked to YOU
Popstar Oritse Williams from the chart topping group JLS visited the MS Society this week (7 October) to show his support to people affected by multiple sclerosis (MS). Oritse, age 22, said: “MS can be tough but Mum tried to protect us from her illness, and she was very strong and brave. Her attitude was that there were always other people worse off and her positivity did help me and my siblings. Visiting the MS Society was great – I met some amazingly inspirational people and it was good to meet the people behind the scenes that make it all happen.” He also took part in a special film by answering questions sent in from young fans affected by MS. Read all about Oritse's visit here.
News: Vitamin D
Genetic study shows direct link between vitamin D and a gene associated with MS An MS Society funded study published today indicates that there is a link between a gene associated with MS and Vitamin D, which may have an affect on the risk of developing MS.
MS is a condition that is thought to be caused by both genetic and environmental factors. For example, certain gene variants are known to increase the risk of a person developing MS (genetic factors). In addition, people living at higher latitudes and in areas with low exposure to sunlight are more likely to develop MS (environmental factors).
A recent study shows that conditions in the environment may influence how genes behave which could in turn impact on the risk of developing MS.
Dr Doug Brown, Research Manager at the MS Society, said: “It’s important to keep in mind that MS is a very complicated condition that is caused by a combination of environmental and genetic factors that may or may not be inter-linked. This research is very interesting and it’s the first study that shows that environmental and genetic factors may be linked, but more work needs to be done to determine the relevance of this to people with MS and find out what other environmental factors may be involved.”
Event: The 'Over the wall gang' summer camp
The Over the wall gang provide FREE residential activity camps during the Easter and summer holidays to children aged 8-17, who are affected by serious illnesses. Watch a video about this amazing summer camp.
Resource: Chat online live with other teens affected by MS in the USA
The MS World chat rooms are open 24/7. All chats are recorded, including private Person-to-Person chats, 24/7 and reviewed. On the first Sunday of each month there is a live moderated chat for teenagers affected by MS. Contact Dr. Rintell for log-on information. Parental permission is required. firstname.lastname@example.org. Previously Recorded MSCasts are also available as Podcasts on iTunes* & Videos on YouTube. Just search for the word MSCast on either of these services.Previous teleconferences are available on the MSCast Website. Scroll down to the Webinar button in the teleconference of interest.