You’re Not Alone!

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

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

Edinburgh Reds go green!

The Edinburgh branch of the Manchester United Supporters Club has raised £1000 from a club raffle for Macmillan Cancer Support.

The branch, founded in 2001 by Peter Wood and Ian McKenzie, organise cost-effective luxury coach travel to United games for Scottish supporters.

Branch Chairman Peter Wood said: “Supporting Macmillan is a no brainer for us. Who hasn’t been touched by cancer? Raising funds is something we can do easily and very readily.”

Ian added: “I am aware of the support and care Macmillan offer as my wife is a nurse. This is an important cause to lots of people and one everyone should support them if they can.”

Macmillan’s Edinburgh Fundraising Manager, Jayne Forbes, said: “We couldn’t fund the services we provide without the support of people like the Edinburgh Reds. We support and improve the lives of people affected by cancer by providing practical, medical, emotional and financial support and by pushing for better cancer care. We’d like to thank Reds committee members Peter, Ian, Umeir, Waqqas and Gordon as well as the entire club for their excellent help.”

Sick kids ‘sew’ happy with new bead bags!

Cancer patients at the Royal Hospital for Sick Children got a big surprise recently thanks to the generosity of local volunteers. Hundreds of ‘bead-bags’ hand-sewn by well-wishers have arrived for youngsters on Ward 2 following a call for donations!

The children are taking part in the ‘Beads of Courage’ scheme, an initiative which allows young patients to create a unique record of all the treatments and procedures they’ve been through during their time in hospital, using colourful beads.

In order to keep the beads safe, each child is also given a bead-bag but supplies had been running low.

Jenny Tomes, Clinical Psychologist, explained: “The children like to thread all their beads on to strings to represent all the experiences they have been through in hospital. To give the children somewhere to keep their precious beads safely, they are given a bead bag, a little cloth draw-string bag. We were getting low on supplies and so we put the word out to see if anyone could help.”

Jenny contacted the hospital’s Voluntary Services Manager, Denise Claxton, who set about recruiting some sewing volunteers.

Denise said: “We couldn’t believe it when parcels kept arriving! In the space of a few weeks around 150 bead bags in all different colours and patterns had been sewn and not just by our loyal NHS Lothian volunteers – but also by their friends and families, who were keen to help too.

“We’re really grateful to all those kind people who spent time making the bags so lovingly for the children on Ward 2.”

The ‘Beads of Courage’ programme is run by the charity Be Child Cancer Aware. To find out more visit http://www.bechildcanceraware.org/

Art exhibition at St Columba’s this week

The 29th Annual Art Exhibition by the Art Friends of St Columba’s Hospice is an excellent opportunity to view and maybe even buy some excellent art for this excellent cause. It will take place at the St Columba’s Hospice Education Centre, Boswall Road on:

Friday 5 June 12 noon – 8pm (incl informal drinks reception from 6pm)
Saturday 6 June – 10am – 4pm
Sunday 7 June – 11am – 4pm

More details to be found here
http://www.stcolumbashospicefundraising.org.uk/events/art-exhibition-5-2423.aspx

Lorraine gies it laldy for STV Children’s Appeal!

Lorraine Kelly will be taking to the dance floor in aid of the STV Children’s Appeal this September, as she dons her kilt for a 24 hour ceilidh extravaganza!

After the success of last year’s Shimmy across Scotland which raised £100,000 for the Appeal, the ceilidh challenge will see Lorraine ‘do-si-do-ing’ her way around the country with the support of her friend Maxine Jones and sponsor Optical Express to raise money for children living in poverty across Scotland.

From the Gay Gordons and Strip the Willow to the Pride of Erin Waltz, Lorraine will be getting Scotland moving with 24 hours of ceilidh dancing. Working alongside the Royal Scottish Country Dancing Society (RSCDS), Lorraine will be encouraging groups not only in Scotland, but also internationally, to host their own ceilidh events on the 11^th-12^th September to help Scotland’s young people.

Lorraine Kelly, trustee of the STV Children’s Appeal, said: “Last year I took on a 24 hour shimmy for the Appeal and this year I’ll be putting my dancing shoes back on. Over 24 hours I’ll be challenging myself by taking on a series of ceilidhs to raise money for children and young people in Scotland affected by poverty. Maxine and I will be travelling across Scotland in September and also encouraging other groups across the globe to join us and host their own fundraising ceilidhs to help raise as much as possible for this vital cause. It’ll be a challenge to keep going but hopefully with support from fellow dancers around the world, I’ll get through.”

Lorraine’s 24 hour ceilidh will be captured by STV’s cameras for the STV Children’s Appeal programme to be broadcast later this year.

Elizabeth Partyka of the STV Children’s Appeal said: “We are thrilled Lorraine will be embarking on another exciting fundraising challenge this year. With support from local communities, the RSCDS and sponsor Optical Express, we are sure Lorraine’s 24 hour ceilidh will help make a real difference to the lives of children and young people affected by poverty.”

To mark the occasion, the RSCDS have devised a bespoke ceilidh dance for Lorraine – Kelly’s Kaper, with a video and dance instructions available for individuals and groups who want to participate!

Elizabeth Foster, Executive Officer of the RSCDS said: “We are delighted to partner STV Children’s Appeal for 2015. We are pleased to be associated with this worthwhile cause and to play our part in helping to raise money for disadvantaged children and young people in Scotland. In many ways this follows on from the successful Commonwealth Ceilidh in 2014 which saw thousands of people around the globe taking part in one massive ceilidh. With some 14,000 RSCDS members worldwide we expect the STV Children’s Appeal to resonate far beyond Scotland.”

Optical Express will be supporting Lorraine Kelly’s Ceilidh Challenge.

David Moulsdale, Chairman and Chief Executive of Optical Express, said: “We are extremely proud to be increasing the support we provide to the STV Children’s Appeal. Being part of the STV Children’s Appeal is very important to Optical Express. We’ve been involved with the Appeal since it launched back in 2011 because we passionately believe that tackling child poverty in Scotland will help to ensure that young people have the best possible opportunities while growing up.

“We can’t wait to see Lorraine dance her way across the country and we look forward to undertaking our own fundraising challenges throughout our network of Optical Express clinics in Scotland.”

If you’re an individual or group that would like to get involved with Lorraine Kelly’s Ceilidhs in aid of the STV Children’s Appeal and help raise funds for children and young people living in poverty in Scotland, please get in touch with Ami Anderson on ami.anderson@stv.tv.

To support Lorraine’s fundraising challenge and make a donation to the STV Children’s Appeal, visit Lorraine’s JustGiving page on: justgiving.com/KellysCeilidh2015

It’s Showtime!

Local group make a song and dance about charity fundraising

Edinburgh-based theatre group Showcase, which has raised more than £220,000 for Macmillan Cancer Support, is celebrating its 25^th anniversary this year.

They are staging three performances of their production ‘Showcase 25’ this weekend in the King’s Theatre when they hope to take the total raised to a show-stopping £250,000.

The group, which has performed in the Church Hill Theatre every year since 1990, with all profits going to Macmillan, boast a wide repertoire of songs and styles.

Director Andy Johnston said: “Showcase is an enormously talented group of singers and dancers – there is literally no musical style they can’t conquer. In the past they have tackled everything from Led Zeppelin to the Sound of Music, all performed in the trademark ‘big choral’ Showcase sound.”

Showcase President Susan Galloway added: “We like to think of ourselves as one big family. And we genuinely believe that every person that walks through the door of the theatre and buys a ticket to one of our shows is contributing – they’re helping make a difference to someone’s life. As far as we’re concerned, that’s the reason we exist.”

Macmillan’s Edinburgh Fundraising Manager Jayne Forbes said: “The support that Showcase has given Macmillan is nothing short of astounding. We are so grateful to them and everyone who goes along to their shows.

“We help people in many ways, from specialist nurses and doctors, to help and advice for people who have financial worries as a result of their cancer diagnosis, none of which would be possible without the support of people in Edinburgh. This is a really special anniversary for Showcase, and I’d urge local people to go along to a show. You are guaranteed an entertaining few hours, safe in the knowledge your ticket money is supporting a wonderful cause.”

Showcase 25 takes place on Friday 29 and Saturday 30 May (matinee and evening performance) in the King’s Theatre. Tickets are from £15 and available from www.edtheatres.com/showcase

Heartbreaking: a child reported missing every TWO MINUTES

250,000 children are reported missing in the European Union every year: the equivalent of A CHILD every TWO MINUTES (European Commission)

Events were held around the world to mark International Missing Children’s Day yesterday (25 May). The day offers an opportunity to raise awareness of young people who have disappeared and also encourages people to think about those who have previously vanished and returned home – and those who have been victims of crime.

UK Home Office Minister Karen Bradley visited the Missing People charity ahead of yesterday’s International Missing Children’s Day and learnt about the Child Rescue Alert System, a crucial tool in helping locate missing people.

The minister met the charity’s Chief Executive Jo Youle and heard from staff how the charity’s helpline provides vital support for missing people and their families.

There was also a demonstration of the Child Rescue Alert System, which is designed to alert the public to an abduction or other high risk child disappearance.

Touring the office, the Minister learnt about plans for this year’s#TheBigTweet, which the Home Office will again be supporting this year. Since last year’s social media campaign, ten of the children and young people featured in #TheBigTweet appeals have been found.

Minister for Preventing Abuse and Exploitation, Karen Bradley, said: “This government recognises that missing children are particularly vulnerable to harm and exploitation, and that they, and their families, deserve the best possible support and protection.

“International Missing Children’s Day is an opportunity to raise vital awareness of these children and young people. I look forward to working closely with Missing People and other partners and am delighted to offer my support to ‘The Big Tweet’. I encourage everyone to get involved.”

Chief Executive of Missing People, Jo Youle, said: “We were delighted to welcome the Minister to Missing People today and to introduce her to the work of the charity within the first fortnight of her new role.

“We discussed priorities for improving services and support for missing people and their families including the need for guardianship legislation to enable families to protect their missing loved one’s finances and property, and the need for better support for children and adults who return from being missing.

“I really look forward to working closely with the Minister and welcome her keen interest in the work of the charity and the needs of vulnerable missing people and their families.”

MISSING CHILDREN: Facts and Figures

250,000 children are reported missing in the European Union every year, the equivalent of around 1 child every 2 minutes (European Commission)

Missing children include several categories of child disappearances, including parental abductions, runaways*, missing unaccompanied migrant minors and criminal abductions

Two to five percent of missing children cases reported involve third party criminal abductions (Missing Children Europe Annual Report 2014)

Runaways make up 50% of missing children cases reported through hot-lines (Missing Children Europe Annual Report 2014)

1 in 6 runaways are assumed to sleep rough, 1 in 8 resort to stealing to survive and 1 in 12 children are at serious risk of some form of abuse (The Children’s Society)

It’s estimated that around 140,000 cases of missing children are reported annually in the UK, the equivalent of around 380 per day (missingchildreneurope.eu)

Missing Children Europe’s Belgian member “Child Focus” opens an average of 4 new cases a day

https://youtu.be/oho8xaMsfsc

‘Music is our first love …’

Showcase 25 set to raise the roof at The King’s Theatre

The concept of Showcase Musical Productions is a simple one – bring together some of the best ‘non-professional’ singers and dancers in Edinburgh and the Lothians area and raise money for Macmillan Cancer Support. That was the vision of John Wright and Bobby Harvey: and this year Showcase is celebrating 25 years of performing!

Showcase 25 will be a musical extravaganza paying tribute to Showcase past, present and future, featuring a selection of numbers from the likes of Les Miserables, Wicked, Queen, Adele and The Beatles. Cast members old and new will be joined by a junior cast, the Showcase of the future, at Edinburgh’s King’s Theatre on 29 and 30 May.

Cast member Carol McGovern has been performing with Showcase for the past 25 years. She said: “I am very proud to have been involved with Showcase for the last 25 years – more than half my lifetime! The variety of music we have performed over the years has been fabulous but it has become frustrating that it takes me longer to learn the notes, words and dance moves than I used to!

“I have made some special friendships over the years and it is lovely that our hobby can also raise funds for Macmillan Cancer Support and help the great work they do, which has become much more than an added bonus to many of us.”

With rehearsals well under way, director Andy Johnston, said: “It has been very difficult compiling a show that accurately represents 25 years worth of Showcase hits – our first draft programme would have run for nearly four hours! – but we feel this show will be an accurate representation of where Showcase came from, and of where we are now.”

The aspiration to celebrate the 25^th anniversary of Showcase at the King’s Theatre has been an exciting one and the performance has something for everyone; rock, pop and songs from the musicals, all orchestrated by musical director David Mcfarlane with imaginative choreography by Claire Smith.

While everyone involved performs in Showcase because of their love of the theatre, there is also a very serious side. Showcase is an important fundraiser for Macmillan Cancer Support in Scotland, having raised over £220,000 to date.

Andy Johnston added: “Each and every one of our cast gives so freely of their talents and time all to benefit Macmillan Cancer Support – I often remind the cast that as a company, we are in a very special position that we have a hobby than can genuinely change someone else’s life – and what can be more important than that?’

With 310,000 people diagnosed with cancer in the UK every year, many of the cast and supporters of Showcase have been affected by cancer and have first-hand experience of the support Macmillan gives.

Jayne Forbes, Macmillan Cancer Support Fundraising Manager, Edinburgh said: “We are extremely grateful to Showcase for their considerable support to date. They have raised an incredible amount of money which has helped us make a real difference to the lives of people affected by cancer.

“We help people in many ways, from specialist nurses and doctors, to help and advice for people who have financial worries as a result of their cancer diagnosis. In Edinburgh there are 53 specialist Macmillan nurses and health care professionals, helping people living with cancer and their families receive essential medical, practical and emotional support.

“None of this would be possible without supporters like Showcase. 98% of our funding comes from public donations. Quite simply, we couldn’t provide our services without the support of local people.”

Showcase supplements its fundraising efforts with concerts throughout the year and will be performing again in the Church Hill Theatre in September but with over 100 voices singing in glorious harmony in just ten days time, it is bound to raise the roof of the King’s Theatre!

Tickets are from £15.75 and are available at www.edtheatres.com/showcase.

This is a performance that is not to be missed!

North Edinburgh rallies to support Nepal

Royston Wardieburn fundraiser to support earthquake victims

The Nepal Scotland Association has organised an evening of Nepalese food, music and dancing at Royston Wardieburn Community Centre from 5pm on Saturday 23 May.

Tickets are available from RWCC reception, or from community members (contact the numbers on the poster).

Show your support for our friends in Nepal!

Light a candle for Nepal

Marking one week since the devastating earthquake in Nepal, Edinburgh residents and visitors are being invited to show solidarity at a candlelit vigil outside the City Chambers tomorrow.

The Lord Provost Donald Wilson lodged an emergency motion at a meeting of the City of Edinburgh Council on Thursday to call on local support for the Mercy Corps Nepal Earthquake appeal.

He said: “When an event as devastating as this take place, I believe it is important for residents to feel they have an opportunity to express condolences and provide united support.

“I urge everyone in Edinburgh to do and give what they can, whether they join us for the candle lighting ceremony, make a donation to the Mercy Corps, pause for reflection or say a prayer for the lives lost.

“Nepal is one of the poorest countries in the world and is suffering one of the most horrific of disasters. The survivors of this terrible earthquake and all of the aid workers in Nepal urgently need sympathy and support from all corners of the world.”

Rajendra Bam, the Chair of the Nepal Scotland Association, added: “The effect on our country has been devastating. We represent about 800 Nepali people in Edinburgh and the Lothians and no one has been left untouched by this tragedy, everyone has a story. Our community is a very close one and what affects one affects another. We are working in cooperation with charities, such as Mercy Corps, towards the urgent relief programme. Anything that you can do to help us is much appreciated.”

Edinburgh-based international charity Mercy Corps has been working in Nepal since 2006. The humanitarian organisation has reacted with an emergency response in Nepal following the massive earthquake and their dedicated team has been working tirelessly, whilst dealing with their own tragedies, to evaluate conditions and deliver emergency supplies to desperate families.

Simon O’Connell, Executive Director, Mercy Corps Europe said: “Our teams have been working hard for the last week to meet emergency needs of survivors in Nepal and assess what is needed for the recovery of the country. We are distributing urgent relief to families in Kathmandu and in villages outside of the capital and working hard to get more emergency supplies in for families who are in desperate need. Time is of the essence and donations are critical to our ongoing relief effort.”

The City of Edinburgh Council is a partner of the Edinburgh Disaster Response Committee which is asking residents to help survivors during the aftermath of the disaster.

A fund has opened with the Edinburgh based humanitarian organisation Mercy Corps for urgent donations.