You’re Not Alone!

Chromosome disorder charity uses social media to ensure to ensure people get the support they need

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Social isolation is a huge problem for many parents of disabled children. Throw in a rare chromosome disorder, often a disorder that has no name, just a long, unfathomable code of letters and numbers, and the problem increases.

The everyday challenges which follow, the never-ending worries about the future,  constant battles to make professionals and even your friends and family understand, leave parents feely confused and very alone.

To help raise awareness of these issues, Unique is running a Chromosome Disorder Awareness Week from 7 -13 June.

Unique is an UK charity supporting families affected by rare chromosome disorders. A spokesperson explained: “The aim is to spread the word to ensure nobody affected is left feeling isolated and alone.

“Everyone needs their friends around them for support, no one should have to feel so desperately alone and yet hundreds of parents with children affected by a chromosome disorder are facing the hardest time of their lives on their own, being rejected by those they trusted most.”

One ‘Unique mum’ said: “When my son was first diagnosed, friends suddenly stopped contacting me. I would see pictures appear on Facebook of the things they had got up to, things that before that point I had done with them.”

Unique, The Rare Chromosome Disorder Support Group, has set up a confidential Facebook group ‘Cafe’ which has grown rapidly to over 3,000 members.

It’s a virtual place where parents can ‘pop in for a cuppa’, vent, ask questions, gain support and also celebrate their child’s achievements.

The Unique spokesperson added: “There is nothing like feeling understood and heard by a community of people who have shared similar experiences.

“It has become a lifeline to parents who feel invisible to the rest of the world, giving them a support network of friends who understand, don’t judge and help them make sense of what is happening to them.

“One mum recently told us: ‘I’ve found that I’ve lost a lot of old friends because they just don’t understand or want to understand my situation. I have made lots of valuable friendships since having my daughter and that’s what counts. The Unique Facebook Cafe group became my lifeline, my access to a wealth of knowledge and my greatest source of support. I soon became friends with three of the mums, we quickly realised we had the same sense of humour and shared a common bond… WE LOVE CAKE! These three women are my bestest, most-treasured and trusted friends!’”

For further information, please contact caroline@rarechromo.org or visit

www.rarechromo.org

City schoolkids tweet their streets

“My street is unique, old – an antique!”

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School pupils from all corners of the Capital have created a mini-map of Edinburgh with a series of tweets about the city’s streets.

The ‘Tweet Your Street’ project, being announced tomorow (Monday 1 June) at the Central Library, sees the launch of an online map where children have started ‘pinning’ poetic tweets about where they live. A selection of tweets will also be on public display within the children’s area of the library.

The map is a result of a series of poetry workshops with P3-S1 pupils from across the Capital and the Edinburgh Makar Christine De Luca.

From the apple trees in Hope Terrace and the cobbles of St Vincent Street, to the cats that stroll along Easter Drylaw Place and the excitement of hearing the jingle of an ice cream van, the map of tweets reveals the essence of living in Edinburgh as a child.

“Walking past running cats

Lovely gardens outside flats

Everyone is full of grace

On Easter Drylaw Place”

(Age 12, Forthview Primary School)

Councillor Richard Lewis, Culture and Sport Convener, said: “These snippets of poetry provide a sweet and honest view of Edinburgh’s communities in the eyes of its youngest residents. In Edinburgh we have a long and proud interest in literature and poetry and it is great to see our pupils’ own writing talent thanks to this project.

“The memories of the street you grow up on stay with you. ‘Tweet Your Street’ captures these memories in a way that will hopefully spark other pupils and residents to view their own communities in a new light and maybe even tweet about it. The Edinburgh Makar Christine De Luca and these pupils have produced a brand new way of mapping Edinburgh and getting students interested in poetry.”

Christine De Luca became the Scottish Capital’s poet in residence, the Edinburgh Makar, and promotes Scottish writing and the Capital’s status as a UNESCO City of Literature locally and around the world. She was appointed as the city’s version of ‘Poet Laureate’ in 2014, and initiated ‘Tweet Your Street’.

Edinburgh Makar Christine De Luca said: “This has been a fun project to do. I’ve really enjoyed working with a group of committed, enthusiastic teachers. Writing a very short poem which captures something about your street isn’t easy, but reading the children’s poems proves it’s possible. Do read them and pass on the link to family and friends. The Central Library has been a great partner.”

All tweets will be available to view online at the Edinburgh Makar website from 11:30am tomorrow.  Here’s a flavour of what to expect:

“In Craigour Loan

The people mingle

To the ice cream van’s jingle

They chat, giggle and play

Every sunny day”

(Age 8 Craigour Park Primary)

“My street is unique

Old – an antique –

It’s Newhouses Road

If you drive in

You have to drive back

You see

It’s a

Cul-de-sac”

(Age 9, St. George’s School for Girls)

Safer Internet Day: friendship in a digital age

Young people take the lead in nationwide Safer Internet Day campaign

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Young people across the UK are joining together to create a kinder online community today,Safer Internet Day 2015, as a new study into Friendship in a Digital Age reveals that 30% of young people have been on the receiving end of mean online behaviour in the past year.

The research comes as official organisers of the day, the UK Safer Internet Centre, launch #Up2Us, a new film made by over 150 schoolchildren about their online experiences – both good and bad – with the aim of inspiring young people across the UK to do something kind online this Safer Internet Day. The film will be premiered at events across the UK today, attended by government Ministers and young people.

Celebrities, including young stars such as Britain’s Got Talent finalists Bars and Melody, and Olympic gymnast Beth Tweddle, have backed the campaign. Beth and other celebrities feature on Safer Internet Day TV, which is hosted by CBBC Friday Download presenters Molly and Harvey, and will be available online today from 11am and 2pm, with a social media takeover by Bars and Melody at 8pm.

They join hundreds supporting the #SID2015 social media campaign to ‘share a smile online’, which is set to reach over 1.5 million in a mass tweet at 8am today, along with over 800 organisations that have pledged their support for Safer Internet Day 2015. High profile partners including the BBC, CEOP, Disney, the FA, Facebook, Google, Lloyds Banking Group, Microsoft, NSPCC, Twitter and the UK Government, as well as hundreds of schools and other organisations, are all coming together to deliver a range of inspiring activities across the UK.

SID2015

Friendship in a digital age

According to the online study of more than a thousand 11-16-year-olds conducted by ResearchBods, more than three quarters (78%) believe that young people have the power to create a kinder online community. The majority (88%) of the young people questioned say they always try to be kind in their online interactions.

The study reveals the huge role that technology plays in supporting young people’s friendships, with over half (55%) saying they interact online with their closest friends several times an hour and 63% saying they are closer to their friends because of the internet. Reassuringly the internet is a positive place for the majority of young people surveyed. When questioned about their time spent on social networks and messaging apps, the majority of 11-16s (63%) felt that people were kind to them on the internet most of the time.

However, some young people face negative experiences online. Almost a third (30%) of young people said that someone had been mean to them in the last year, with 1 in 20 (5%) saying that people were mean to them most of the time on the internet.

Many of these young people are taking positive steps to tackle these negative experiences, with three-quarters (75%) of young people who experienced mean behaviour saying they have blocked someone in the last year, while 68% said they have supported someone else who was being targeted online.  More positively, 64% of young people said they felt able to cope with anything negative that might happen online and 81% said they know what to do if someone is abusive towards them online.

An additional survey of UK adults by ComRes demonstrates that this isn’t just an issue for children. 45% of adults who use social networking and messaging apps said they occasionally see people on their social networks and messaging apps posting unkind, negative or upsetting content. People sharing gossip and rumours has occurred for three quarters (72%) of adults using social networking and messaging apps, while around three in five (59%) have experienced people posting things that attack a certain group (e.g. racist, sexist or homophobic comments).

That’s why everyone is being encouraged to play their part in creating a better internet.

Will Gardner, Director of the UK Safer Internet Centre, said: “It’s heartening to hear that the majority of young people are finding the internet a positive place on the whole, but there’s more to be done to make sure that’s the experience for everyone. We’re encouraging everyone to take action today – whether that’s sharing a smiley face or making a promise about your online behaviour. It really is up to us to make the internet a better place.”

For more information on the activities taking place to celebrate Safer Internet Day, visit the UK Safer Internet Centre website.

Report: Friendship_in_a_Digital_Age

 

Edinburgh Police launch festive safety campaign

keep safePolice in Edinburgh have launched their annual campaign to keep people safe during the festive season.

As part of Operation Greenland, (formerly Operation Astrodome) officers in the city centre will each day issue a special ‘Countdown to Christmas’ photo on social media. The image will relate to a specific theme of festive safety or update the public on policing activity being carried out over Christmas and New Year.

The public can receive these images and updates by liking the Edinburgh Division Facebook page and by following the @EdinCityPolice Twitter account.

Social media users can also join in the discussion about the campaign by using the hashtag #OpGreenland.

As always, officers within the Capital will provide a high-visibility presence across the city in the coming weeks to offer a range of crime prevention and personal safety advice.

In addition, police will specifically target busy areas and destinations during the holiday season to distribute specially designed leaflets that inform the public on how to ‘Shop Safe’ and ‘Party Safe’.

Chief Superintendent Mark Williams, Divisional Commander for the City of Edinburgh said: “Edinburgh is one of the most beautiful, vibrant and safe cities in the world, and the policing plans we’re announcing today means this is set to continue into the festive season and beyond.

“The city is already getting busier, with locals and visitors taking full advantage of the shopping and attractions on offer, and many people will soon be out enjoying festive nights out in the restaurants, pubs and clubs.

“We are keen to ensure people can have a safe and enjoyable time whilst soaking up the fantastic atmosphere that the city has to offer.”

Community Safety Leader of the City of Edinburgh Council, Councillor Cammy Day, said: “Edinburgh is a safe place to visit and to live in, and our winter festival attracts people from around the world each year.

“We want to make sure that everyone will enjoy themselves and stay safe. I urge revellers to keep an eye on their belongings during a night out and to act responsibly.

“Working closely with the police and other agencies, our community safety wardens will be conducting high visibility patrols. Starting at the end of November, extra patrols will be out on Friday and Saturday evenings, and there will be a daily focus on the winter festival area.”

Ch Supt Williams said there are a number of simple steps you can take whilst enjoying the festive season. “Make sure you are always aware of your surroundings and keep your property safe when out and about. If you’re enjoying a night out in town then please drink responsibly and don’t let excessive alcohol consumption ruin your evening.

“This will also be our most interactive festive season yet and through social media we will issue a new ‘Countdown to Christmas’ photo each day with further information and advice. Members of the public can view these images by liking the Edinburgh Division Facebook page and following our @EdinCityPolice Twitter account.

“Updates on all Operation Greenland activity will also be available on these sites, as well as our @EdinburghPolice Twitter account, which covers the entire city.”

Meet beats tweet when looking for work

‘Getting out there and speaking with people is just as important as being online’ – Grahame Smith, Scottish STUC

job-interviewTechnology may have invaded every aspect of our lives, but new research shows a personal touch is still the best when it comes to getting a job.

The 2014 Employer Perspectives Survey, released today by government skills experts the UK Commission for Employment and Skills (UKCES), shows that despite the meteoric rise of social media, just 7% of employers say they’ve used it to recruit new staff.

Based on interviews with more than 18,000 employers across the UK, the study reveals that recruitment methods involving the human touch, such as filling vacancies through word of mouth and personal recommendation are still widely used by employers.

Just over one in ten (11%) of employers said they used work experience as a recruitment tool, whilst the number offering a job as a result of a speculative enquiry has more than doubled.

Although the findings may be welcomed by parents who are unconvinced that their offspring’s broadband consumption actually equates to job hunting, the researchers say the findings point to a greater need to hone jobseekers’ social skills.

Grahame Smith, a Commissioner at UKCES and General Secretary of the Scottish TUC said:

Digital skills are crucial in the modern workplace, and while many young people excel in this area, these findings show how important it is for jobseekers to also develop their personal presence. Getting out there and speaking with people is just as important as being online, but it’s more difficult for the digital generation.

That’s why it’s important to break down the barriers between education and employers. By offering simple things like business mentoring, careers talks, work experience and mock interviews, businesses can make a huge difference to the future of young people. Our research shows that whilst only a minority of employers currently work with schools and colleges in this way, the good news is that those that do say it’s easy and rewarding.

Michael Davis, chief executive of UKCES, said:

For those looking for work, making use of social media when job hunting can bring a world of information at the click of a mouse, but when it comes to making that all important first impression it seems there’s no substitute for legwork.

This research shows that what really matters to employers is an opportunity to get face to face with candidates, and get a real understanding of how they tick and what they can offer.

For employers it’s important to not become over-dependent on one form of recruitment. Our research shows that word of mouth is still commonly used to hire staff – but this risks missing out on a huge talent pool just because people don’t happen to be plugged into the right professional networks.

By striking a balance, both sides can benefit. Creating strong links with local education providers is just one way of achieving this, allowing employers to see first-hand what young people can offer, while simultaneously giving young people opportunity to build crucial contacts.

Other findings from the report include:

  • businesses in London and the south-east are most likely to recruit a young person – 32% of employers have recruited a young person in the past 12 months.
  • businesses in the East Midlands, the south-east and the south-west are most likely to have recruited an older person (aged over 50) with 33% of employers reporting they’ve taken on an older member of staff in the past 12 months.
  • nearly half (49%) of hotels and restaurants have recruited young people in the past year, compared with just 13% of employers in the utilities sector.

OMG! STV to host Facebook referendum debate!

Social media’s the latest referendum battleground 

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STV will host the first and only official Facebook independence referendum debate between the Yes Scotland and Better Together campaigns tonight.

Scotland Decides: The Facebook Debate will see the SNP’s Humza Yousaf MSP and Labour’s Douglas Alexander MP putting their arguments to Scotland’s voters – as many as 10% of whom may still be undecided.

The debate, which will air on STV Glasgow and be available on Facebook at 9pm and then repeated at 11.40pm on STV.

Facebook users will be invited to pose questions to the two politicians in advance of the debate on the STV News Facebook page and on Facebook’s Democracy UK page.

Questions will then be posed to Mr Yousaf and Mr Alexander on Friday throughout the course of the 30-minute session. As the debate unfolds on TV, people will be able to see the action in real-time on Facebook whilst continuing to share their thoughts and engage after the event.

Elizabeth Linder, Facebook’s politics & government specialist for the Europe, Middle East & Africa region said: “Millions of people from all walks of life in Scotland have joined the referendum debate on Facebook. Whether it’s candidates making their pitch, voters discussing the issues they care about, or friends persuading each other to go and vote – it’s all taking place on Facebook.

“As we enter the final week of the campaign and the polls start to narrow, referendum discussion on Facebook is really heating up. People in Scotland are turning to Facebook to get their questions answered before making their decision on September 18. We hope that the live Facebook debate on Friday will answer some of these questions to help undecided voters reach a decision.”

Bobby Hain, director of channels at STV, said: “STV has played its role at the heart of the referendum debate on air and online and this partnership with Facebook serves as a further great opportunity to engage and inform our viewers on multiple platforms.”

The live debate, which will be moderated by Rona Dougall, presenter of STV’s current affairs programme Scotland Tonight, will be filmed at STV Glasgow’s studio and promises to offer a different dynamic to previous debates, with a format which will see both representatives have more of a fast paced and to the point question and answer session

The debate follows a Facebook campaign, launched last month in partnership with the Electoral Commission, to encourage people to register to vote. People over the age of 16 using Facebook in Scotland can add a “Registered to Vote” Facebook “Life Event” to their Timeline, to announce that they have registered and plan to vote in the Scottish Referendum next week. In the run-up to the close of registration, people in Scotland were also shown posts in their Newsfeed raising awareness of an interactive Referendum guide, launched by the Commission to inform voters on how and where to vote.

STV Glasgow is available in Glasgow and the west on Freeview #23, Sky #117 and Virgin #159 and streamed live online on the STV Player

 Like?

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How do you like your news?

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How do you get your information? How do you find out what’s happening in your local area? TV, radio, newspapers, social media, newsletters, posters, emails, leaflets … there are so many different ways to be kept informed, but what works best for you?

Forth and Inverleith Neighbourhood Partnerships are supporting an initiative to improve local communications, and they need your help to get things right!

How do you currently access information and how would you prefer to receive communications? Please complete the attached online survey at:

https://www.surveymonkey.com/s/NorthComms

It should only take a few minutes to complete or, if you prefer, this can also be done using the printable version (attached below).

If friends or colleagues don’t go online – and many people still don’t have access to a computer – please let them know about the survey; why not print off a copy for them?

But do it soon – the survey closes in two weeks on 31 May!

Printed Communications Questionnaire May 2014

NENfrontpage

You couldn’t make it up: No makeup selfies raise £8m for Cancer Research!

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It’s been a social media phenomenon that’s swept the country – even the Scottish government has joined in the fun. The ‘no makeup selfie’ is one of those daft ideas that just takes off – and it’s raised over £8m for a cancer charity in just six days!

Cancer Research UK did not start the campaign – but they’re sure glad someone did!

Last Tuesday, after people began tweeting their #nomakeupselfie pictures and asking how they could use them to make a difference to Cancer Research UK’s work, the charity posted a message on its Facebook and Twitter pages with information about how to support its work to beat cancer sooner.

Since then, Cancer Research UK has received an unprecedented increase in the volume of donations and visits to the website.

The money raised will enable Cancer Research UK to carry out more research sooner, including ten clinical trials which last Tuesday it did not have money to fully fund!

Cancer Research UK supports over 200 clinical trials looking for better and kinder treatments for all types of cancer, and Chief Executive Dr Harpal Kumar said: “We’ve been overwhelmed by the support people have been showing us through the #nomakeupselfie trend.

“We don’t receive any government funding for our research and so it’s phenomenal to think that the generosity of the public is enabling us to fund critical research that we didn’t have the money for six days ago. Being able to fund more trials will bring forward the day when all cancers are cured.

“It’s been an exciting week, and we’d just like to thank everyone again for their support. If people would like to support our work to beat cancer sooner, they can visit www.cruk.org.”

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Fast Forward praise for NENgage sessions

Leith-based national voluntary organisation Fast Forward has launched a new blog showcasing their range of projects across Scotland following participation in the recent NENgage social media workshops. 

Rona Saunders, Fast Forward’s communications officer, attended the NENgage sessions and has used learning from them to create the blog and embed short films. She said: “The NENgage sessions were good to meet like-minded individuals and learn new skills.  I’ve brought them back to our organisation and shared them with our staff.  It’s a great way for us to demonstrate the range of work we do with young people across the country.  It was super to attend free sessions locally to learn all the skills required.  Thanks very much to the whole NENgage team”.

Fast Forward is the national voluntary organisation promoting health by, with and for young people, focusing on the prevention of alcohol, drug and tobacco misuse.  The new blog features contributions from the whole staff team and features films and images from their sessions.  The active Fast Forward volunteer team of young people are also currently creating blog posts for future contributions.

You call follow the Fast Forward blog here: http://fastforwardorg.wordpress.com/ and there’s more info about the organisation at www.fastforward.org.uk

And thanks for the plug, Rona!

 

Free social media training for community groups in Inverleith – how to build an online community

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We’d like to invite community groups and active citizens in Inverleith to our fourth free NENgage training session next week, Building an Online Community. It’s a chance to learn how you can use social media to help promote your community projects, campaigns and causes.
 
Many people forget that in order to get the most out of social media, you have to be…well, sociable!
 
The most successful blogs, websites and social media users are the ones who interact, engage and respond to users, and who build up a loyal “digital community” around them. It’s an approach that can take a bit more work to start with, but which ultimately leads to a dynamic site where useful stories and ideas flow to you.
 
For this session, we have invited successful bloggers to speak about how they have managed to foster an online community; Phyllis Stephen, who set up and runs The Edinburgh Reporter website, and Alan McIntosh of The Spurtle. Tom Allan will also be talking about setting up the Edinburgh Innertube Map website, and Emily Dodd will be speaking about her experience as a blogger and volunteer for Greener Leith.
 
The session is aimed at community groups and active citizens in Inverleith, is being held at Stockbridge Library, from 5:45pm to 7:30pm on Thursday the 27th of September – with drinks in the Antiquary Bar afterwards. Please come along!