Events

Christopher’s Man United Journey

Many of you will know Christopher was a massive Man Utd fan. Thanks first to Lee Sharpe and especially Jimmy Curran, physio his last 5 years were so special for him, meeting many players including David Beckham 4 times and Sir Alex 3 times. Christopher’s United journey is to feature in a documentary film being made by Keith Norris who lives in Whitehead, Northern Ireland. Keith is the owner of the well known flag “Big Lily” which was displayed many times at the Stretford End of Old Trafford. Chris used to say “there’s Big Lily”. Our photo shows Big Lily draped over the side of Carrickfergus Castle. Keith travelled the world following United with Big Lily, meeting many Utd Supporters Clubs. He has recently visited many countries meeting those fans who will feature in his film called “United’s Big Lily – The Flag of Friendship”.

It was very special for us when Keith said he would like to include Christopher’s journey in his film. Keith has already visited us to record an interview and then unveiled a wonderful “Wee Lily” flag to Christopher at his headstone the day after his 18th anniversary. A special moment. It will be next year before this is completed and we will advise further at that time.

Gerry and Geraldine

Update on Northern Ireland Children’s Hospice Donation

Thomas Wilson, Trusts and Major Donor Engagement Executive, recently invited us to visit the Children’s Hospice to view their new Memory Sensory Garden. While it is not yet completed Thomas felt it would be a nice time to visit it as we approached Christopher’s anniversary. We were so pleased when Thomas told us that the £5,239 donation the charity made last year was, along with another donation, being used to rebuild their memory garden. This new colourful garden has additional new features with the ponds replaced by new colourful stone areas. Large pebbles which contain the names in memory of children will be placed on top of these areas.

To know the garden will bring much comfort to families, either at a difficult time, an anniversary or somewhere to spend time when staying at the Hospice, is very special for us and everyone who supported the charity should feel very proud.

As said before we believe the Northern Ireland Children’s Hospice is the most special place in Northern Ireland. The Children’s Hospice only receives approximately 30% of government funding so please support them when you can.

Thank you – Gerry and Geraldine

Christopher with our Patron Lee Sharpe

At the Belfast Giants August 2001

Finally, this will be our last communication with the main purpose being to summarise all the charity has achieved, as well as to thank everyone for all their support. Since announcing our decision to close we have been telling many people that the “vision” for our charity was decided back in August 2001. In late 1997 following a major spine operation, Christopher endured an 18 month delay in replacing his wheelchairs. We then decided to campaign in 2000 for better wheelchair provision for young disabled people which led to meeting the then Health Minister in Stormont. During that time we received great support from the press and radio. We then felt setting set up a charity would raise even more awareness and if this would help even one young person get the equipment they needed it would mean so much.

We told Christopher about the charity and he said he would come to the next meeting at Stormont. However, a week later he sadly passed away and did not get that opportunity. Ironically the Assembly subsequently closed for almost six years until 2007 so we waited until then to finally set up the charity. Looking back even to 2001 we could never have envisaged all that the charity has been able to achieve through our three main aims: awareness; Duchenne Research and equipment for young disabled people. Not only has the charity given us the opportunity to raise awareness with the general public, we could not have expected The McCollum Report to be issued by the All Party Group on Muscular Dystrophy in Stormont with reference to The Christopher McCollum Fund. Its 15 Recommendations set out to improve care and support for everyone in Northern Ireland with a neuromuscular condition, one of which was for better wheelchair provision.

To date the charity raised £104,000 which has purchased 40 items of equipment for young disabled people in addition to purchasing approximately 700 hours of vital research time into Duchenne MD. As advised in our recent posts two amounts of £5,293.77 has been recently donated to the Northern Ireland Children’s Hospice and Helping Hand (RBHSC) to purchase further items of equipment.

None of this would have been possible without the tremendous support from so many people over the past 10 years. We sincerely thank every single person for their support and to those who volunteered their time especially either by donating or helping raise funds. Each of you can look back with pride as you have helped to improve the quality of life of young disabled people and to help find a treatment for Duchenne MD.

Thank you – Gerry and Geraldine

Charity Closure Finalised

After we closed the charity at the 31st March 2018, being our financial year end, we had to then complete the Annual Returns to the Charity Commission NI. This included Audited Accounts, a Trustees’ Report on the year past, an On-Line Monitoring form plus this year an On-Line Closure form. We were pleased to recently receive a letter from the Charity Commission to say all is finalised and The Christopher McCollum Fund was noted now as “ceased to exist”. We felt it right to advise this on both the website and Facebook. It also gives an insight into the work involved in administering a registered charity. We have met many people who say well done on all the charity achieved and we always say it was due to everyone who supported the charity over the 10 years.

We also hope to personally continue to raise funds for other charities but could not do so until the above was finalised. If there is any event we will endeavour to let people know.

Gerry and Geraldine McCollum (November 2018)

Christopher with our Patron Lee Sharpe

At the Belfast Giants August 2001

Finally, this will be our last communication with the main purpose being to summarise all the charity has achieved, as well as to thank everyone for all their support. Since announcing our decision to close we have been telling many people that the “vision” for our charity was decided back in August 2001. In late 1997 following a major spine operation, Christopher endured an 18 month delay in replacing his wheelchairs. We then decided to campaign in 2000 for better wheelchair provision for young disabled people which led to meeting the then Health Minister in Stormont. During that time we received great support from the press and radio. We then felt setting set up a charity would raise even more awareness and if this would help even one young person get the equipment they needed it would mean so much.

We told Christopher about the charity and he said he would come to the next meeting at Stormont. However, a week later he sadly passed away and did not get that opportunity. Ironically the Assembly subsequently closed for almost six years until 2007 so we waited until then to finally set up the charity. Looking back even to 2001 we could never have envisaged all that the charity has been able to achieve through our three main aims: awareness; Duchenne Research and equipment for young disabled people. Not only has the charity given us the opportunity to raise awareness with the general public, we could not have expected The McCollum Report to be issued by the All Party Group on Muscular Dystrophy in Stormont with reference to The Christopher McCollum Fund. Its 15 Recommendations set out to improve care and support for everyone in Northern Ireland with a neuromuscular condition, one of which was for better wheelchair provision.

To date the charity raised £104,000 which has purchased 40 items of equipment for young disabled people in addition to purchasing approximately 700 hours of vital research time into Duchenne MD. As advised in our recent posts two amounts of £5,293.77 has been recently donated to the Northern Ireland Children’s Hospice and Helping Hand (RBHSC) to purchase further items of equipment.

None of this would have been possible without the tremendous support from so many people over the past 10 years. We sincerely thank every single person for their support and to those who volunteered their time especially either by donating or helping raise funds. Each of you can look back with pride as you have helped to improve the quality of life of young disabled people and to help find a treatment for Duchenne MD.

Thank you – Gerry and Geraldine

L/R Nigel Kearney, Geraldine, Mairead McAllister, OT Department, Gerry

As said on our previous post on the Children’s Hospice, our Dissolution Clause on closure allows us to use the remaining funds to support a charity with similar aims in helping improve quality of life of young disabled people. We recently visited the Royal Belfast Hospital for Sick Children to present a cheque for £5,239.77 to Helping Hand (RBHSC) which is the official charity to the Children’s Hospital. We have been aware of the work Helping Hand has been doing for the past 20 years. The charity was set up by medical staff at the Children’s Hospital in 1997 and they play a vital part in improving quality of life of young people who attend there by providing specialist medical equipment and other items which the Health Trust do not provide.

Nigel Kearney of Helping Hand said: “We were delighted and honoured to receive a donation of £5,239.77 from The Christopher McCollum Fund as a result of their winding up of the charity.

We have been aware of the good work done by Gerry and Geraldine and help given to many young people their charity has supported who have attended “The Children’s” over the years. We have undertaken to ring-fence this donation for the provision of equipment or services identified by our Occupational Therapy Department that will benefit young people with a disability and need specialist help.

We are indebted to The Christopher McCollum Fund for their hard work and dedication over the past ten years and thank everyone who has donated to or taken part in their various fundraising activities that has made such a difference to so many.”

We thank Nigel for his kind words and especially for thanking everyone who has supported The Christopher McCollum Fund over the years. The Children’s Hospital is a very special and important place in Northern Ireland and as we prepare to close our charity we are so pleased to make this donation. We thank everyone who has given their support to our charity to enable us to make this donation and this will now be the last donation from our remaining funds. It is even more special to do this because Christopher spent many weeks in Paul Ward in the Children’s Hospital in the 90s and we could never have imagined all these years later that funds from a charity in his name would be going to support “The Children’s”. We hope to continue to give our support on a personal basis to this special place and if possible please consider supporting Helping Hand also. Please view the link below to learn more about the work they do:

www.helpinghandrbhsc.co.uk

We were so pleased last year to purchase some items of equipment, (see picture above) for the Northern Ireland Children’s Hospice at Horizon House. Our Dissolution Clause on closure allows us to use the remaining funds for charities with similar aims in helping improve quality of life of young disabled people. We have just donated a further £5,239.77 to the Children’s Hospice which will be ring-fenced to buy items to support the young people and families who attend there. As far as we are aware Northern Ireland still has the highest percentage of life limited children in the UK and the Children’s Hospice is vitally important to all these families. Many people feel the Hospice is only there for end of life care but it is much more than that. Many young people visit over many years, build friendships and create lasting memories. It costs £3 - 4 million each year to run the Children’s Hospice who only receive approximately 30% government funding.

The Children’s Hospice is a very special place in Northern Ireland and as we prepare to shortly close our charity we are so happy to give this further donation from The Christopher McCollum Fund. Once again we thank everyone who has given their support to our charity as you have played a part in helping young disabled people in the Children’s Hospice. We hope to continue to give our support on a personal basis to this very special place and if possible please consider doing this also. Please view the link below to learn more about the work that they do:

www.nihospice.org/childrens-hospice

Final Donation to Duchenne Research

We have recently forwarded a cheque for £4,500 to Muscular Dystrophy UK Duchenne Research Breakthrough Fund. As our charity will shortly be closing this will be our last donation from The Christopher McCollum Fund. It has meant so much to us to have played a small part in helping to find a treatment(s) for Duchenne Muscular Dystrophy. Our sincere thanks to everyone who has supported the charity, either with donations or volunteering their time, in support of Duchenne MD. Since the Breakthrough Fund was launched in October 2012 your support has helped us donate £25,158.55 which has purchased approximately 700 hours of vital research time.

When setting up the charity in 2007, as well as to raise awareness/provide equipment, we wanted to raise funds for Duchenne research. It is so good to see the progress that has been made in the past 10 years into helping to find treatments, with Translarna already available here in Northern Ireland. We firmly believe that in time further treatments will be discovered.

CHARITY ANNOUNCEMENT

As we approach the end of our current financial year the Trustees have taken the decison to close the charity as at 31 March 2018, being our financial year end. We know this may come as a surprise but we have no doubt we have taken the right decision. As a registered charity we are aware of the importance to act responsibly at all times. There are a number of reasons, some personal, why we have taken this decision at this time. In addition to this our income has also reduced considerably during the current financial year as have equipment enquiries. Since July 2017 we have only had one enquiry for an item of equipment which we felt we could support and which fits our criteria. We will shortly make a final donation to the MDUK Duchenne Research Breakthrough Fund which we have supported annually during the past 10 years. Following this, in line with the Charity Commission for NI guidelines for closure and, together with our Constitution’s Dissolution Clause, we will make donations to two other charities with similar aims. We will be posting items on each of these in due course and in late March a final message on what the charity has achieved over the past 10 years which will also thank everyone for their support.

Mitchell House Pupils Benefit From Invictus Active Trainer

Sarah tests the Invictus

Invictus Trainer

We recently purchased an item of equipment for Mitchell House School, Belfast which is a co-educational school for children with physical disabilities. As we have purchased equipment for them before the Assistant Physio Karen Johnston emailed to ask if we could consider funding an Invictus Active Trainer Wheelchair Treadmill package. This consists of a “treadmill” or a “rolling road” to enable wheelchair users to push their own wheelchair to improve fitness, balance and technique together with a stand with a bluetooth sensor to display all the measurements to measure progress over time. The school had this on trial and identified a number of pupils they felt could benefit from the type of workout the Invictus offered. The benefits were: strengthening, post-surgery rehabilitation, improve stamina and exercise tolerance, general health and wellbeing.

Karen further wrote to say – “The opportunity for aerobic exercise is limited for wheelchair users and this is vital to keep heart and lungs functioning well. Lung function is an important consideration for doctors when deciding if a young person is fit for surgery.” In addition Karen asked some of the pupils to say how they felt about it and the difference it made to them. One pupil said “I feel like I’m getting fit and having fun.”

We have agreed to support this as we feel this unique piece of equipment would have a range of benefits for quite a number of children with the potential to have a positive impact on their quality of life as indicated above. The NHS will not provide this piece of equipment.

Maeve’s Happy Face Says Her Tomcat Trike Is Great

The charity recently purchased a customised Tomcat Fizz trike for Maeve McCooey. Maeve is aged four, lives in Omagh, Northern Ireland and has Cerebral Palsy which affects all four limbs. Her mum Jennifer contacted the charity as she felt a special trike would help Maeve with her independence and also improve the strength in her legs. We received a letter of recommendation from Maeve’s physio who said Maeve is dependent on others for all her activities and uses a walker at home. She has a standing frame to aid with hip development and feels Maeve’s legs would strengthen if she was able to propel a trike which in turn would help her ability to stand. She also confirmed the NHS do not provide funding for trikes.

We have agreed to support the purchase of this trike for Maeve as we feel this would benefit her and improve her quality of life. It will also give her the opportunity to experience the freedom of being able to use the trike for independent movement and to interact with her sister. Jennifer emailed to say: “Maeve received her trike today and she couldn’t wait to get outside. The trike will be life changing for her and give her the greatest feeling of independence. Just wanted to thank you so so much for your help funding the trike it means the world to both me and Maeve”.

We send our best wishes to Maeve and hope she enjoys her new Tomcat Fizz trike. Thanks to everyone who supports the charity as without your help this would not have been possible.

Reggie’s Tomcat Fizz Trike Is Ready To Go

The charity recently purchased a customised Tomcat Fizz trike for Reggie Finlay. Reggie is aged two and a half and lives in Londonderry, Northern Ireland and has severe Cerebral Palsy which affects all four limbs together with other medical problems. His mum Lauren contacted the charity as she felt a special trike would give Reggie a new lease of life and let him enjoy an activity that other children were doing. We then received a letter of recommendation from Reggie’s physio who said that Reggie presents with increased tone, limited active movement, is not able to mobilise independently and uses a standing frame. She felt Reggie would benefit from a customised trike to provide lower limb strength and coordination in order to improve his ability to mobilise. It will also promote social inclusion with his family and peers. She confirmed the NHS do not provide these trikes.

We have agreed to support the purchase of this trike as we feel it will benefit Reggie and improve his quality of life. Lauren emailed to say: “a massive thank you from us for funding his trike. We really appreciate it.”

We send our best wishes to Reggie and hope he enjoys his new Tomcat Fizz trike. Thanks again to everyone for their support which will give Reggie more independence.

Jude’s Tomcat Makes Pedalling Fun

The charity recently purchased a customised Tomcat Trike for Jude McDonagh. Jude is aged two and a half, lives in Ahoghill, Ballymena, Northern Ireland and has Spastic Diplegia Cerebral Palsy which affects his lower limbs and he does not have full control of his leg muscles. Jude is unable to stand without support and requires the assistance of a walking aid to walk. His mum Melissa contacted the charity as she felt a special trike would be of great benefit to him as he finds sitting in his buggy frustrating. We then received a letter of recommendation from Jude’s physio who advised that as well as not having full control of the muscles of his legs there is potential for the muscles to tighten up. She felt a trike would be a good form of exercise in that it would encourage strengthening of the leg muscles potentially improving his cardio-vascular fitness. In addition it would also assist the development of his balance whilst pedalling. Both Melissa and the physio felt the trike was an alternative way for Jude to explore his world and interact with his peers. We agreed to purchase the trike for Jude as we felt it would improve his quality of life in different ways both socially with other children and therapeutically. The NHS will not provide this piece of equipment. Melissa emailed to say “he was so excited about it coming today and just loved it when he got onto it. He is able to pedal himself so it is great for him. Thanks again for funding it for us it’s greatly appreciated”.

We send our best wishes to Jude and hope he enjoys his new Tomcat trike. Once again we thank everyone who has supported the charity to enable us to support young people like Jude.

Bangor Public Continues To Support "Chris"

We held our 7th annual Street Collection in Bangor on Saturday, 29th July. The sun shone and also shone on our collection boxes as a tremendous £419.19 was donated on the day. We thank everyone who made a donation as well as the interest they showed in the work of the charity. In the seven years we have been doing street collections the Bangor public have donated a total of £3,048 to The Christopher McCollum Fund to help both fund equipment for young disabled people and at times research into Duchenne Muscular Dystrophy. Our thanks also go to our volunteers Jenny McQuitty, Jill Hardy, Willie & Maureen Kenny and Brian Cassidy for giving up their time. The photo of Brian was taken at the back entrance of Asda and our thanks again to Victoria Gregg, their Community Life Champion, who, as there was no in-store collection on the day, allowed us to collect at the rear of the store. This raised over £100 and shows again how generous the customers of Asda are. Thanks again everyone for your support.

Ethan’s New Trike Hits The Road

We were pleased to recently help purchase a Tomcat Custom Trike for Ethan Parks. Ethan is aged two and a half, lives in Gilford, Co Armagh, Northern Ireland and has Cerebral Palsy affecting all four limbs. Ethan’s mum Zoe emailed our charity to say how she felt a trike would be of help to him. We then received a letter of recommendation from Ethan’s physiotherapist who advised he had severe problems with co-ordination, postural control and muscle tone all of which affected his quality of life. She advised that regular use of a therapy trike would promote correct alignment in Ethan’s hips along with increased muscle strength. It would also aid social inclusion with both peers and family promoting better self-esteem.

We felt a trike will improve Ethan’s quality of life both as muscle therapy and with his social development. Ethan’s mum Zoe emailed to say “I am extremely grateful to the charity for funding this. It is already making a huge difference to his life. He cried when I took him off it!”

The NHS do not provide these very special customised trikes. We send our best wishes to Ethan and hope he enjoys his new trike.

Two Special 15th Anniversaries Remembered

Gerry, Tracey Bell, Aine Gallagher, Maisie, Geraldine, Grace Stewart

Under our charity’s Aims we can support another charity who support young disabled people in Northern Ireland. We were pleased to recently visit the Northern Ireland Children’s Hospice as we have purchased several items of equipment which they urgently needed for their family rooms. As Christopher’s 15th anniversary in September 2016 also coincided with that of Horizon House which opened in October 2001 we wanted to mark both anniversaries in a special way. Christopher had also been invited to the opening but sadly passed away before then. We discussed this with Aine Gallagher, Company Secretary, and suggested donating £1,500 for each anniversary totalling £3,000. Gerry then discussed with Grace Stewart, Care Services Manager, who advised they would benefit from having special Stargazer chairs for their family rooms. We increased our amount to £5,000 to purchase 3 Stargazers with the balance to purchase some new mattresses which were also needed. The Stargazer chairs can be used by the family and also young people staying at the Hospice as they can be converted into beds.

It is very special for us to see The Christopher McCollum Fund support the Children’s Hospice as it is one of the most special places in Northern Ireland which has the highest percentage of life limited children in the UK. Several of the young people we have bought equipment for have attended the Children’s Hospice. Many people feel that a family may only go to the Hospice for end of life care but in fact it is much more than that. As well as providing respite for families it also offers opportunities for building friendships and creating lasting memories. During our visit we were pleased to meet the latest recruit to the Children’s Hospice Team, Maisie the dog who appears in the above photo.

It cost between £3 - £4 million each year to run the Children’s Hospice who only receive approximately 30% government funding. Please consider giving your support to this very special place.

Please view this video to learn more about the work that they do:

Northern Ireland Children’s Hospice Overview

Tomcat Fizz Trike Helps Adam Get Stronger

We were really pleased to recently help purchase a Tomcat Fizz trike for Adam Millar. Adam is aged 3, lives in Dundonald, Belfast and has Cerebellar Hypoplasia which includes floppy muscle tone. Adam’s mum Janette sent a letter to say how the trike would help strengthen his legs and his hands by holding onto the handle bars as well as enable him to sit well in an upright position. Adam also will be able to mix with other children in his street. We received a letter of recommendation from his school physiotherapist who confirmed that Adam had been assessed for a trike in the school. During this he made attempts to propel the trike and she feels this will increase his lower limb tone as well as build his muscle power. She also advised the NHS do not provide trikes.

We felt the trike will benefit Adam in different ways as well as improve his quality of life.

We send our best wishes to Adam and hope he enjoys his new trike.

Our PPod Makes Life Comfortable For Katie

We were very pleased to recently purchase a special PPod chair for Katie O’Neill. Katie is aged 16 months, lives in Magherafelt and has Spinal Muscular Atrophy (SMA) Type 1. Katie’s mum Roisin emailed to say Katie is extremely weak, has no muscle tone and requires Bipap for breathing at different times throughout the day and night. We received letters of recommendation from Katie’s occupational therapist and paediatric consultant on why they felt a PPod chair would be of benefit to Katie. Her OT said Katie has a Triton 0 high-low chair provided by the NHS but it is a rigid system and Katie cannot tolerate sitting for more than 45 minutes. She felt a PPod would enable Katie to be in a more comfortable position. Her consultant said that due to Katie’s weakness she mainly lies flat and felt that the PPod would hold Katie in a good position. It also will elevate her head and shoulders offering full support and comfort thus allowing her to achieve better lung function. Her mum Roisin also said the PPod will allow Katie to interact more with her family. We felt the PPod will in different ways improve Katie’s quality of life.

Katie is one of several young children in Northern Ireland who are receiving the drug Spinraza on trial. This is the first drug in the world to treat SMA and has been approved in America as well as recently by the European Medicines Agency (EMA). It is hoped in the coming months that NICE will approve this in the UK and that NHS England will then make this available. If that happens it is hoped the drug will become available in Northern Ireland similar to the drug Translarna for Duchenne MD.

We send our best wishes to Katie and hope she enjoys her PPod.

Team Emerald – What a Difference You Made

We have recently received the final monies from Halifax Mortgage Sales/Lloyds Telephone Banking for Team Emerald and we are pleased to say they raised a fantastic £12,123.99 during 2016 for The Christopher McCollum Fund as their Charity of the Year. It meant so much to us to be selected as their charity and once again our thanks to Damian McCluskey, Senior Team Manager Mortgages for nominating us in January 2016. From our first visit the enthusiasm of the Team in wanting to support us was clear to see. They were very interested to hear about Christopher, Duchenne Muscular Dystrophy and why we try to support young disabled people in getting the equipment they need as soon as possible to help improve their quality of life. When we attended a number of their events it was wonderful to hear to hear how each member told the public about Christopher, Duchenne and the work of the charity. We then donated £3,000 to the MDUK Duchenne Research Breakthrough Fund with the balance going towards equipment. As well as thanking every member of Team Emerald for volunteering their time a special thanks must go to Paula McAleese for organising the many events. Thanks again everyone and every success in supporting other charities in the years ahead.

A New Tomcat Keeps Lilia Pedalling

Lilia and her sisters Grace and Cassie

The charity has recently helped purchase a custom Tomcat Fizz trike for Lilia McClements, aged 9 who lives in Coleraine. Lilia was born with a rare genetic mutation STXPB1, and other conditions including severe development delay. Lilia has been using a trike since age 3 but has now outgrown this. Her parents felt it was important to continue to have the use of a trike which helps her muscle tone and lower limb strength. We were pleased to help support the family who also made a contribution towards the total cost to get this new trike for Lilia as quickly as possible. As Lilia is unable to walk or stand without full support her Occupational Therapist feels it is important for Lilia to continue to have the use of a trike as it allows her to have the benefit of gross motor activity. She also advised that the NHS do not fund trikes for children. The trike also allows Lilia to have the opportunity to experience more social inclusion with her sisters aged 4 and 12 by using the trike rather than sitting her wheelchair/buggy. Her mum Christine emailed to say: “It's absolutely fabulous. Lilia loves the wind in her face as she rides her trike, and when she is excited waving her arms all the lorry drivers going past wave back to her. We are so grateful to you all at the Christopher McCollum Fund. We know that Lilia will get many years of enjoyment from the trike as well as much needed physical therapy and our other two children will have the experience of having Lilia alongside them as they ride their bikes together”.

The Christopher McCollum Fund recognises the need for all children to be able to play together and thanks to the lobbying of Christine and her husband Gregg a one-of -its kind Diversity Park was officially opened in September 2016 in Portstewart. This new play park is designed for children of all abilities and includes play equipment for users with disabilities and sensory needs. This inclusive park will allow Lilia to play alongside her sisters and Christine said “the play park recognises that there are children with learning and physical disabilities within our community, and their ability to play and live full lives is important too”.

We all wish Lilia many happy hours of cycling on her Tomcat Fizz with her sisters Grace and Cassie.

Thumbs Up For Brave Nessa’s Tomcat Fizz

Nessa with her sisters

The charity has recently purchased a Custom Tomcat Fizz trike for Nessa Girvan, aged 4 who lives in Lurgan. Nessa was born with Hydrocephalus and underwent major brain surgery in Alder Hey Hospital, Liverpool in December 2014. She also has several other complex conditions. Presently Nessa is able to walk by holding onto parallel bars or with adult support. Her physiotherapist feels that she has the potential to walk and that pathways to her brain just need to be laid and consolidated. It is hoped that the pedalling action on the Tomcat may help with this consolidation as well as assisting Nessa in developing her motor skills and muscle strength. The Tomcat trike will also improve Nessa’s quality of life as it will give her more freedom outside of her wheelchair buggy with the opportunity to participate in family days out with her older sisters and to socialise with other children her own age. The trike comes with a parent/carer handle at the rear if assistance is needed. Her proud mum Eleanor emailed with photos to say: “Just 24hours with her new trike. Look at the joy ... She has taken to it like a duck to water. We are completely delighted with it and cant thank you enough. This evening when I got home from work we ALL went outside for ages. Nessa thoroughly enjoyed her time on the trike. What a difference it's going to make to Nessa”.

Once again many thanks to all our supporters without whom this would not have been possible and we all wish Nessa many happy hours of cycling on her Tomcat Fizz with her family.

'Spirit of Chris’ Continues To Support Vital Research

We are pleased to have donated a further £3,000 to the MDUK Duchenne Research Breakthrough Fund. This has been possible thanks to the great support we received last year from Team Emerald of the Halifax Mortgage Sales, Lloyds Telephone Banking at The Gasworks, Belfast. It means so much to us to donate funds at a time when research is progressing so well into finding a treatment(s) for Duchenne MD. We sincerely hope that lobbying the European Medicines Agency will be successful in obtaining approval for the drug Exondys 51 and then the subsequent approval by NICE in the UK. Since the DRB Fund was launched in October 2012 The Christopher McCollum Fund has, with this further amount, now donated £20,658.55 which has purchased almost 585 hours of vital research.

Cara Puts Her Tomcat Tiger To The Test

We were delighted to hear that Cara Weatherall recently received her Tomcat Tiger trike which the charity has purchased. Cara is aged 4, lives in Belfast and has Dystonic Cerebral Palsy which affects all four limbs and trunk. When Cara was assessed for the trike she pedalled it very well and, following this, we received a letter of recommendation on the benefits of the trike from Cara’s physio. The Tomcat Tiger trike will allow Cara to socialise with other children her age and also experience the freedom of being able to use a trike rather than be in her wheelchair buggy. In addition it will also provide good trunk and pelvic support as well as improve her quality of life. If assistance is needed there is a parent/carer handle at the rear of the trike. Cara’s mum Sharon said: “Despite having a cold Cara couldn’t wait to get out on it, and spent an hour and a half today riding it. She loved it so much I couldn’t get her off it! Thank you so much again for making this possible. We can’t thank you enough.”

We wish Cara many happy hours of cycling on her Tomcat Tiger.

Brady Chambers Is On Fire

Brady with his dad David

It was great news to hear that Brady Chambers recently received his new RGK Tiga Jnr wheelchair and Frontwheel accessory which the charity purchased. Brady is aged 10, lives in Moira, Northern Ireland and has a rare spinal condition. As part of this package, the charity, along with Brady’s parents, also part funded a SmartDrive MX2. The SmartDrive MX2 and Frontwheel are add-on accessories which will enable Brady to travel with ease over any terrain. This will power his chair for up to 12 miles and will give him the freedom to be able to go for walks with his family and not have to worry about long journeys tiring him out. He wants to be able to keep up with his younger brother on his bike and not have to ask people to push him. This lightweight wheelchair will also allow Brady to move around more freely and greatly improve his quality of life. Brady plays for the Junior Barbarians Wheelchair Rugby club and got his RGK Tiga Jnr backrest customised with his name and their logo. Brady’s mum Louise emailed to say “The wheelchair is absolutely amazing and fits Brady perfectly. He is delighted with the chair and he said ‘makes him feel really good’ when he is in it”.

We send our best wishes to Brady and hope he enjoys more time with his family and playing rugby.

2016 – Thank You All For Your Support

We would like to thank everyone who has supported The Christopher McCollum Fund in 2016 either with donations, fundraising, volunteering their time or supporting our events. Special thanks also to both the Bangor Civil Defence Services Club and the Emerald Team from the Halifax Mortgage Sales/Lloyds Telephone Banking for selecting us as their Charity of the Year. It was thanks to everyone’s support that during this year we were able to purchase 6 items of equipment for young disabled people, with 2 more in the pipeline for early 2017. Also we are pleased that we have now funded 500 hours of research into finding a treatment for Duchenne Muscular Dystrophy. Our street collection in Bangor for the first time raised over £500 thanks to the generousity of the Bangor public. In addition it was very special, in what is Christopher’s 15th anniversary year, to have received the Humanitarian Civic Award from Ards & North Down Borough Council. We again thank everyone who came to The Black Box, Belfast event Songs for Chris returns, Music & Memories to mark his 15th anniversary and which was another great night of music.

We wish everyone a happy and healthy 2017.

Team Emerald – What A Festive Christmas Result

Zoe McLean & Geraldine & Gerry

Damian McCluskey, Gerry, Geraldine & Paula McAleese

Staff from Team Emerald of Halifax Mortgage Sales recently held a cake and bun sale, along with a raffle for a Christmas hamper put together by Geraldine. This raised a tremendous £323.25 which will again be matched by the Halifax Foundation. Our thanks to Paula McAleese for organising another successful event and all the members of Team Emerald for their support and donating all the delicious cakes and buns. Well done Zoe McLean on winning the hamper. Sadly for us this is the last of the many events they have held during 2016 supporting The Christopher McCollum Fund as their chosen Charity of the Year. It was great for us to join with them on the day and also have a photo taken with a presentation cheque for ........ £11,892! This is an approximate figure from all their support this year. What an absolutely fantastic amount which will be used towards equipment for young disabled people and also the MDUK Duchenne Research Breakthrough Fund. We will confirm the exact figure in January but at this stage our sincere thanks to every member of the Emerald Team for again volunteering all their time and support.

‘Spirit of Chris’ Achieves 500 Hours of Vital Research

2016 has been a successful year in finding treatments for Duchenne Muscular Dystrophy. The first ever drug Translarna, which benefits up to 13% of young people with Duchenne, is now available in Northern Ireland. A further drug Exondys 51 (previously known as Eteplirsen) has recently been approved in America. Lobbying has already taken place at Westminster attended by NI MPs along with a family to start the process to obtain approval in the UK.

We are pleased to have recently donated £1,500 to the MDUK Duchenne Research Breakthrough Fund which is thanks to funds raised by the Bangor Civil Defence Services Club and also from the ‘Songs for Chris returns’ night in The Black Box to mark Christopher’s 15th anniversary. Since the Breakthrough Fund was set up in October 2012 The Christopher McCollum Fund has donated £17,658.55 which has purchased almost 500 hours of vital research. We look forward to hearing about further emerging treatments in 2017.

Team Emerald in Asda Bangor – A Bumper Bag Pack

Staff from the Emerald Team of Halifax Mortgage Sales/Lloyds Telephone Banking recently held a Bag Pack in our local Asda Bangor store. Having supported our charity all year this was their last outside event and what a successful way to finish it was. They raised a quite fantastic £725.18 which again will be matched by the Halifax Foundation making a grand total of £1,450.36! This will go towards equipment for young disabled people and the MDUK Duchenne Research Breakthrough Fund. Our thanks to Aaron, Emma and all the volunteers who gave up their time to man the tills, or collected at the entrances, as well as supporting Geraldine at our usual in-store information table at the rear entrance. It was great to see their enthusiasm and promotion of the charity on the day.

Our sincere thanks to all the Asda customers for their support and generousity as well as the interest they showed in the charity at our information table. Our thanks also to Victoria Gregg, Asda’s Community Life Champion for all her support. We look forward to Team Emerald’s last event of the year in their Gasworks premises which will include a Christmas hamper raffle.

Bangor CD Club’s Great Year Supporting “Chris” Ends

Bangor Civil Defence Services Club, with the support of G&H Film & TV Services, have raised a fantastic £3,000 for The Christopher McCollum Fund as their Charity of the Year. It meant so much to us to be chosen as, being a Bangor charity, it is special to receive this local support. We had a really enjoyable year meeting the members and attending some of the various fundraising events they held. It also gave us the opportunity to raise awareness on disability, Duchenne MD and speak about Christopher. Our sincere thanks to Brian Watson, the Committee and Members for raising such a magnificent amount, which included a very generous donation from G&H Film & TV Services. A special thank you again to Brian Cassidy for nominating us as well as organising the various artists who gave their support to the events. The funds raised will go towards equipment for young disabled people and also the MDUK Duchenne Research Breakthrough Fund.

Songs for Chris returns – Music and Memories

Once again thank you Anthony Toner, Brendan Murphy, Matt McGinn, Stevie Scullion (Malojian) and John McCullough for giving everyone another magical night of great music in The Black Box on the 12th October. Following our 30 Songs for Chris event last year Songs for Chris returns was a special way to mark Christopher’s 15th anniversary. It meant so much for us to see four of Northern Ireland’s most talented singer/songwriters and piano player get together to put on a performance everyone will remember for a very long time. We are pleased to say that £1,256 was raised on the night which will go towards equipment for young disabled people and MDUK Duchenne Research Breakthrough Fund. Our thanks again to Rachael and the staff of The Black Box which is a great venue, also John McGurk of the Sunday Life for promoting the event. A special moment on the night was when Anthony, about to sing his great song Sailortown, dedicated it to Bap Kennedy and how everyone was thinking of him at that time. Bap sadly passed away on 1st November. We were lucky to see Bap in concert and he will be sorely missed as he was another great singer/songwriter.

Ross Enters Dublin Marathon for “Chris”

You may remember Ross Moneypenny ran the Belfast Marathon in 2014 for The Christopher McCollum Fund --- well Ross is now going to run the Dublin Marathon for the charity this weekend on 30th October. What another fantastic gesture by Ross, who is married to Nadine, one of Christopher’s cousins. He though never met Christopher so it is special again to see him want to support the charity with another “marathon” effort. Here is a link to Ross’s JustGiving page and we hope everyone will support him: Ross's JustGiving Page

Good luck Ross and enjoy the day.

Songs for Chris returns – Another Night To Remember

Geraldine, Stevie, Brendan, Matt, Anthony, John, Gerry

This is just an initial report on Songs for Chris returns at The Black Box last Wednesday night to mark Christopher’s 15th anniversary. A further report will follow once we know the amount raised etc. But ....... what another fantastic night it was! Thanks to everyone who came along. The Black Box is an excellent venue and the atmosphere was electric. Once again we were all privileged to witness a “world class” night of original songs, guitar playing, stories and banter from four of Northern Ireland’s best songwriters Anthony Toner, Brendan Murphy, Matt McGinn and Stevie Scullion (Malojian), accompanied by the dazzling skills of John McCullough on piano. They were all in great form. Our thanks to each of them for supporting us and giving everyone another night they will not forget. We think it is the first time all five have shared the stage together and we are so lucky in NI to have such talented artists and musicians. As a momento of the evening we gave everyone a copy of the event poster, designed by Anthony, along with a “15” poster as above, which includes some photos of Christopher but more so some of the young people the charity has supported. Thanks to Team Emerald from Halifax Mortgage Sales who sold the raffle tickets which meant that every £ raised will be matched by Halifax Foundation and to Dessie and Maureen Hill who manned the ticket desk as well as counting the raffle money. Gerry & Geraldine

'Songs for Chris returns' – one week to go!

Just one week to go until our event Songs for Chris returns is back in The Black Box. We are so pleased to have 4 of the best singer/songwriters in Northern Ireland, accompanied by the dazzling John McCullough on keyboard, to mark Christopher’s 15th anniversary. It will be another night of fantastic songs, music and fun between the musicians. Our thanks again to Anthony Toner for all his help, support and of course for designing the event poster. On the night there will be a special “15” poster on each table as a momento of the night. We will again be holding a raffle which includes a signed event poster/signed CDs donated by the artists, a Hotel Chocolat selection and a prize from The Black Box. All proceeds will go to equipment for young disabled people and MDUK Duchenne Research Breakthrough Fund. For further information and tickets please visit:

The Black Box Website

‘Songs for Chris’ returns

What a great night it was last year at The Black Box with ‘30 Songs for Chris’ which featured Anthony Toner, Ben Glover, Brendan Murphy, Matt McGinn and John McCullough. WELL --- on Wednesday, 12th October ‘Songs for Chris’ returns will revisit The Black Box with Anthony, Brendan, Matt and John with the addition of Malojian (Stevie Scullion). Christopher had two loves – Man Utd and music. 30 Songs for Chris helped mark his 30th year and this year we have ‘Songs for Chris’ returns to mark Christopher’s 15th anniversary. We are really delighted to have 4 of Northern Ireland’s most talented singer/ songwriters accompanied again by the sensational John McCullough on keyboards to remember this.

Once again our sincere thanks to Anthony for all his support, contacting the artists, The Black Box and again designing another wonderful event poster with a special feature being a photo of a young Christopher.

Proceeds from the event will go to Equipment for young disabled people and also MDUK Duchenne Research Breakthrough Fund.

The Black Box can seat 170 at small tables with limited standing room. There is a multi storey car park 5 minutes walk away behind St Anne’s Cathedral which can be accessed via Edward Street.

This promises to be another fabulous night of music, songs, and stories with great craic from this fantastic line-up. Tickets which cost £12 can now be purchased online at: The Black Box Website

Team Emerald Return To Belfast For ‘Chris’

The 8th September 2016 was Christopher’s 15th anniversary and it was great to then have a street collection in Belfast City Centre by the Emerald Team on Thursday, 15th September 2016. Looking back 15 years ago the 15th September was a difficult time and we could never imagine that 15 years later we would be collecting funds in Belfast in Christopher’s name. Our sincere thanks for organising this goes to Paula McAleese and the staff from the Emerald Team at Halifax Mortgage Sales who volunteered on the day. As well as being a special time for us we are pleased to say that £239.28 was raised, which again will be matched by the Halifax Foundation to make a total amount of £478.56. This will again go towards equipment for young disabled people and MDUK Duchenne Breakthrough Research Fund.

A Screaming Success for Team Emerald

We are pleased to say that the 17 members of Team Emerald from Halifax Mortgage Sales, The Gasworks, Belfast all survived the longest Zip Line in Ireland, as well as the 30/50 ft Drop Zones at Todd’s Leap, Ballygawley. We understand there were a few screams but it was all worth it in the end as at present they have currently raised a fantastic £1,198.25. This of course will be matched by The Halifax Foundation. Our sincere thanks to Paula McAleese for organising this and to everyone who gave up their Sunday to take part in another event to support us as their Charity of the Year. All funds raised will go towards equipment for young disabled people and MDUK Duchenne Research Breakthrough Fund.

World Duchenne Awareness Day – 7 Sept

In 2014 the 7th September was declared World Duchenne Awareness Day (WDAD). The 7th day of the 9th month was chosen as there are 79 exons in the Dystrophin gene. For us the 7th September is a significant date as on the 7th September 2001 Christopher went into hospital and passed away on the 8th. So, as we approach Christopher’s 15th anniversary, to see a focus on WDAD each year at this date is special to us particularly as The Christopher McCollum Fund continues to raise funds to help find a treatment for Duchenne. Progress is being made and one drug Translarna, which can treat 15% of young people with Duchenne, has recently become available in Northern Ireland. All the funds we raise for research are donated to the MDUK Duchenne Research Breakthrough Fund and here is a link to see how they have used all the funds raised so far. MDUK will also announce on the 7th September new projects they will be funding. There is a long way to go but we look forward to the day when a treatment(s) may be found for Duchenne Muscular Dystrophy.

Muscular Dystrophy UK Article

Team Emerald Zip and Jump for ‘Chris’

Here we go, here we go...

At least 17 members of Team Emerald of Halifax Mortgage Sales/Lloyds at The Gasworks Belfast, who are supporting us this year, have volunteered to challenge Ireland’s longest Zip Line at Todd’s Leap Ballygawley on Sunday, 11th September. The Zip Line is 500 metres long and at its peak 50 ft high. A well as the Zip Line they will also do a 30 ft jump from the Drop Zone. This again is fantastic support for the charity and we thank everyone for giving up their Sunday to do this and being so brave!!

It is also Christopher’s 15th anniversary weekend and to see this support on the 11th September makes the event even more special for us. If you would like to support them here is the JustGiving link and remember every £ donated is then matched by Halifax Foundation:

Lloyds Banking Group Emerald Crew JustGiving Page

All funds will go towards equipment for young disabled people and the MDUK Duchenne Research Breakthrough Fund.

Just to add Team Emerald will also be in Belfast City Centre on Thursday, 15th September to do a street collection so again if you see them please give them your support. As said with Christopher’s 15th anniversary approaching it is lovely to see these two events taking place.

Christopher Completed his 'Lap the Lough' for 'Chris'

We are really pleased to say that Christopher Muzenda successfully completed “Lap the Lough” for “Chris” on the 28th August. This was a 95 mile cycle around Lough Neagh and Christopher has so far raised £525 which, when matched by the Halifax Foundation, means £1,050 will have been raised. Once again a big thank you to Christopher for deciding to take on this challenge which has raised such a tremendous sum. This will be used towards equipment for young disabled people and also MDUK Duchenne Research Breakthrough Fund. Sincere thanks Christopher and hope you enjoyed the event.

Christopher Muzenda "Lap the Lough" for "Chris"

Team Emerald of Halifax Mortgage Sales at The Gasworks are supporting our charity all through this year, organising lots of events. Every £ they raise is then matched by the Halifax Foundation which is tremendous. At the end of the year the funds raised will go towards Equipment and the MDUK Duchenne Research Breakthrough Fund. One of the team Christopher Muzenda decided he would like to take on the challenge of “Lap the Lough”. This is a 95 mile cycle race around Lough Neagh and what a fantastic gesture this is by Christopher. As well as thanking him we have an opportunity to support him as he has set up a JustGiving page. If anyone would like to show their support remember your donation will be matched by the Halifax Foundation and here is the Just Giving link below:

https://www.justgiving.com/fundraising/ChrisMuzenda-LaptheLough2016

Best wishes Christopher and hope you enjoy the event. Sincere thanks for your support.

A Record Day In Bangor for “Chris”

Once again we held our annual Street Collection in Bangor on Saturday, 30th July. We thought Bangor was a bit quieter this year and then for the first time on a collection day we had to contend with RAIN with umbrellas up and down from lunchtime onwards. BUT ..... what a successful day it turned out to be! We collected £547.35 which is a RECORD amount for us as well as the first time we exceeded £500. This proves again the overwhelming generousity of the BANGOR public and we thank everyone who supported us on the day as well as the interest they showed in the work of the charity. Thanks also to Victoria Gregg of ASDA who, as there was no in-store collection that day, allowed us to collect at the rear of their store. Again a big thank you to our volunteers Jenny McQuitty, Jill Hardy, Maureen Kenny, Willie Kenny, Brian Cassidy, Christopher Hardy and a special thanks to Megan Ali who joined us for the first time. It was another great day for us in Bangor.

Team Emerald at Tesco - What A Result

Staff from the Emerald Team of Halifax Mortgage Sales/Lloyds Telephone Banking at The Gasworks Belfast recently organised a Bag Pack for our charity in the Tesco Extra store in Newtownards. What a fantastic day it was raising a magnificent £939! Geraldine was also there as we set up our usual in-store information table in the foyer. As we are the Emerald Team Charity of the Year Halifax Foundation then match any amount raised which means the Bag Pack raised an unbelievable £1,878 in total.

We would like to sincerely thank all the Tesco customers for their wonderful generousity and also the interest they showed in the work of the charity. Our thanks also to Campbell Keatings, Charity Champion at Tesco Ards, for his support and help on the day.

Thanks again to everyone in the Emerald “Tesco” Team who volunteered their time and also to Paula McAleese for organising this. To see the Team in our “Chris” charity caps and sashes speaking so enthusiastically about Christopher and the charity was very special for us as we approach his 15th anniversary.

Fantastic News for Duchenne

You may have seen in the media that Translarna, the first ever drug in the world, which can treat an underlying genetic cause of Duchenne Muscular Dystrophy (MD) has been granted funding in Northern Ireland. It is suitable for the 15% of children whose Duchenne has been caused by a nonsense mutation, are aged 5 and over and still walking. It is hoped that Translarna will keep them walking for some years and delay the need for a wheelchair. This can help between 7 – 10 young people in NI and is wonderful news. The effectiveness of this drug, which is manufactured in Northern Ireland, will be assessed over a 5 year period. Along with others we, through the MD All Party Group at Stormont, pressed both the Health Minister and Director of Commissioning to make this available here. We were always promised that if NICE approved this in England and NHS England agreed to fund it then Northern Ireland would follow suit. No one expected though it would happen within 24 hours of the NHS England announcement and thanks must go to the Health Minister Michelle O’Neill for granting this so quickly. As well as improving the quality of life of the young people who will benefit from this we also hope it will act as a stepping stone to when other treatments may be found for other mutations of Duchenne in the future.

SONGS FOR CHRIS – RETURN TO THE BLACK BOX

Announcing the return of a special Songwriters in the Round event in aid of The Christopher McCollum Fund to mark Christopher’s 15th anniversary.

Featuring:

Anthony Toner, Brendan Murphy, Matt McGinn, Stevie Scullion (Malojian) and John McCullough (piano)

The Black Box, Belfast

Tickets £12

Doors open 7.30pm, show starts 8pm

Proceeds to Equipment for young disabled people and Muscular Dystrophy UK Duchenne Research Breakthrough Fund

Event poster and further information on tickets will follow shortly.

Riley – Born To Try

We would like to share with everyone an amazing video which was taken by Riley’s dad Sean. The song accompanying the video is “Born To Try” by Delta Goodrem. As you may have seen in an earlier post, in partnership with Whizz-Kidz, we were delighted to fund a Skippi powered wheelchair which, as you will see, has given Riley the freedom and independence she dreamt of. Our thanks to Whizz-Kidz for giving us the opportunity to share in the purchase of this life changing piece of equipment and to all our friends and volunteers for their continued support, without which none of this would be possible.

Teresa, Riley’s mum said: “Riley's new Skippi power chair has arrived and she just loves it! A lot faster than her old one and even allows her to go up and down. Thanks to all involved in making this happen”.

Ben Gets Out And About In His Clik Wheelchair

We were really pleased to part fund a Clik lightweight manual wheelchair package in partnership with Whizz-Kidz for Ben Johnston. Ben is aged 6 and lives in Waringstown, Craigavon, Co Armagh. He has a tracheostomy and has Pontine Hypoplasia. Ben’s parents applied to Whizz-Kidz for a lightweight manual wheelchair to replace his buggy which he had outgrown and which was no longer appropriate for him. He has a large Chunc manual wheelchair from the NHS but this requires a large vehicle in order for it to be transported by his father mainly to school. A new lightweight wheelchair will allow Ben to continue to travel in a care seat with his mum and brothers in the family car. The NHS will not provide a lightweight wheelchair to replace his buggy. Ben’s parents also wanted him to have the opportunity to develop some independence by learning how to self propel even for short distances. Ben was assessed by Amanda Hopkin, Senior Mobility Therapist, Whizz-Kidz. This identified seating issues required for maximum support to stabilise his pelvis and support his spine in order to gain arm function for self propelling.

Whizz-Kidz agreed to fund the Clik wheelchair. Ben’s mum Ciara contacted us as suggested by Whizz-Kidz to ask if our charity could fund the cost of the special postural seating. We received a letter of recommendation from Amanda Hopkin and were pleased to support this part of the wheelchair package as we felt this would benefit Ben both in terms of increased independence and social participation which improves his quality of life. Ben’s mum Ciara emailed to say “Ben is getting on really really well! He is self propelling consistently, and enjoying his independence! We cannot thank you enough. In the few short weeks we've had the chair, Ben has experienced so much! Tonight he was down with our goats with his brothers, which he hasn't been able to do before!”

Whizz-Kidz are a leading UK charity who work hard to transform the lives of disabled children, supporting them to become confident and independent young adults. They provide the vital equipment, support and life skills they need to reach their full potential. We are pleased that our charity is working in partnership with Whizz-Kidz to support Ben at this time and the aim of both charities is to help more children in Northern Ireland gain their independence and pursue active lives.

We send our best wishes to Ben.

Riley Gets Her Dream Wheels

We were really delighted to part fund an Otto Bock Skippi powered wheelchair package in partnership with Whizz-Kidz for Riley Moss. Riley is aged 5 and lives on her parent’s farm in Ballinamallard, Co Fermanagh. She has a number of complex health issues, including a recent genetic diagnosis of Rubinstein Taybi Syndrome, of which there are only 8 others in the world who have a mutation on this gene. Riley’s parents approached Whizz-Kidz for a powered wheelchair (pwc) as they felt this would give Riley more independence and increase her social development. They had approached the NHS but were declined. To help show Riley was capable of managing a pwc they bought a second hand chair themselves. This though was 7 years old and was not suitable for the postural support Riley now needs. Riley was assessed by Amanda Hopkin, Senior Mobility Therapist, Whizz-Kidz for a pwc that was suitable for indoor use and also for use outdoors in the family’s purpose built play area as well as for Riley to visit her grandmother on a nearby farm. Whizz-Kidz agreed to fund the Skippi which has a tilt and riser to allow Riley to be involved at home based activities with her 2 sisters.

As part of this package special postural seating is required to suit and stabilise Riley when using the Skippi. Riley’s mum Teresa contacted our charity at the suggestion of Whizz-Kidz to see if we could fund the special seating. Teresa also sent a video of Riley operating the second hand chair which clearly showed Riley was capable of managing this item of equipment. We also received a letter of recommendation from Amanda Hopkin and were very pleased to fund this to enable Riley to have this pwc which will improve her quality of life immensely. Teresa emailed us to say “Riley just loves it and is so proud to show it off to everyone who visits. I wish to thank you and Whizz-Kidz as you both understood from the start how important it was for Riley to have this independence, playing with other kids. We can never thank Whizz-Kidz and SpiritofChris enough for what you have given to Riley and to us. It is literally life changing”.

In the next few days we will share a wonderful video Teresa has sent of Riley in her new Skippi.

Whizz-Kidz are a leading UK charity who work hard to transform the lives of disabled children, supporting them to become confident and independent young adults. They provide the vital equipment, support and life skills they need to reach their full potential. We are pleased that our charity is working in partnership with Whizz-Kidz to support Riley at this time and the aim of both charities is to help more children in Northern Ireland gain their independence and pursue active lives.

Working Together As a Team for Nathan

Nathan with his new sports wheelchair

Nathan back row, end right

We were recently asked by Whizz-Kidz, a leading UK charity, if we could help with the final funding needed to purchase an Elite sports wheelchair package for Nathan McCabe. Nathan is 13, has Cerebral Palsy and lives in Castlewellan. We received a letter of recommendation from Amanda Hopkin, Senior Mobility Therapist, Whizz-Kidz as to why it was felt Nathan needed a more specialised wheelchair. Nathan plays for the Knights Wheelchair Basketball Club and the Northern Ireland Under 15 Wheelchair Basketball Club who recently won the finals of the Lord’s Taverners Junior League in England (see link below). He now needs a high level performance wheelchair suitable for training and participating at a national level. The Elite sports wheelchair will enable Nathan to compete at a high level in his chosen sport thus increasing his independence, social participation and improving his quality of life. The NHS will not provide this piece of equipment.

Whizz-Kidz are a leading UK charity who work hard to transform the lives of disabled children, supporting them to become confident and independent young adults. They provide the vital equipment, support and life skills they need to reach their full potential. We are pleased that our charity is working in partnership with Whizz-Kidz to support Nathan at this time and the aim of both charities is to help more children in Northern Ireland gain their independence and pursue active lives.

Northern Ireland U15 Wheelchair Basketball Squad Strike Gold

Therapy is Fun with a Bronco Walker

Kole and Lila with Angela Wilson using the Bronco Walker in The Mencap Childrens Nursery

We were recently asked by Angela Wilson, Senior Physiotherapist, if our charity could purchase a Bronco Walker Size 0 for use by the pupils of The Mencap Childrens Centre Nursery (formerly Segal House). The Bronco allows children to be mobile and enjoy the freedom of walking. It also helps the Physio Department in teaching and encouraging young children with physical and learning disabilities to walk. The design of the Bronco makes learning to walk fun for the child and can be easily adapted to fit many different children. As well as being used for therapy pupils can also enjoy being with other pupils at break times which encourages social interaction and enhances their quality of life. It was also important to have the Bronco Walker funded at this time as the plan is to make this available to families during the summer holidays.

We are really pleased to have this opportunity to support these young children. Our thanks also to Healthcare 21 for their help in providing this.

Bronco Walker Makes Therapy Fun

Joshua using the Bronco Walker in Mitchell House

We were recently asked by the Physio Department of Mitchell House School if our charity could purchase a Size 2 Bronco Walker for use by their pupils. This Walker allows children to be mobile and enjoy the freedom of walking. It also helps the Physio Department in teaching and encouraging young children with physical and learning disabilities to walk and can be adapted for many different children. Mitchell House had been using a smaller Bronco Walker in their nursery but as children move up into the main school they loose the opportunity to continue with this therapy. The larger size Bronco Walker 2 we have purchased will allow these children to be able to continue learning to walk both in therapy and also enjoy break times with other pupils, which enhances their quality of life. It was also important to have the Bronco Walker funded at this time as the plan is to make this available to families during the summer holidays.

We are really pleased to have this opportunity to support these young children. Our thanks also to Healthcare 21 for their help in providing this.

3 Caps for Chris Northern Ireland Euros Raffle – A Result

With Northern Ireland getting a great result V Ukraine and now into the last 16 of the Euros we are pleased to report another great result from the Emerald Team Halifax Mortgage Sales/Lloyds Telephone Banking who with our 3 “Chris” charity caps signed by Michael O’Neill, Jimmy Nicholl and Steven Davis, along with other N.I. Euros items and including a Euro Sweep, raised a tremendous £451.60. Congratulations to Karl McElroy for winning the full package and to Paula McAleese for all her organisation of this. Once again many thanks to David Currie, International Team Administration Manager with the IFA, for arranging for the caps to be signed. Good luck to the Northern Ireland team for their next game.

3 Caps for Chris Euros Raffle

Following on from the success of 30 Caps for Chris at our gala dinner last year we now have 3 more very special “Chris” charity caps signed by Michael O’Neill, Manager N Ireland, Jimmy Nicholl, Assistant Manager and Steven Davis, Captain. We have put together a Northern Ireland package for the Euros and the Emerald Team, Halifax Mortgage Sales, who are supporting us as their Charity of the Year, will use this to raise funds over the next few days from the staff in The Gasworks, Belfast. As well as our 3 charity caps in a presentation bag there are 2 NI Euros tee-shirts, 3 NI Euros CDs including “Making Our Way To Paris” and also a DVD of the film “Shooting for Socrates” on the Northern Ireland team in the Mexico World Cup 1986.

Our sincere thanks to Michael, Jimmy and Steven for signing these to help raise funds for Equipment and Duchenne Research. Our main thanks must go to David Currie, International Team Administration Manager with the IFA, who not only arranged for the caps to be signed but he also took the photos of Jimmy and Steven! Thanks also to Paula McAleese and the Emerald Team for their support with this and good luck in selling the tickets.

Remembering Christopher at Gala Dinner Awards Night

Brian Cassidy, Paula Galloway, Mayor Alan Graham, Geraldine, Gerry, Damian McCluskey

Geraldine, Baroness May Blood, Gerry

We were delighted to recently be presented with a Civic Award for Humanitarian Services by Ards & North Down Borough Council at a Gala Dinner in Bangor Town Hall. It was very special to receive this and we want to share this award with all our volunteers and everyone who has supported The Christopher McCollum Fund over the past 7/8 years. We sincerely thank the Council for selecting us and it was a lovely event to be at with 5 other worthy award winners. As well as a certificate presented by the Mayor, each award winner was given an engraved Tipperary crystal glass bowl by Baroness May Blood, who was the Keynote Speaker. The main thank you should go to Paula Galloway for not only thinking about the charity but also for then nominating us. It was good to have Paula with us at the event along with Brian Cassidy and Damian McCluskey as they all are supporting the charity so much this year. We have many memories of Christopher enjoying Council events so to then hear Mayor Alan Graham say how "in Christopher’s memory, the charity is purchasing equipment for young people with disabilities or life limited illnesses, as well as funds for research into Duchenne Muscular Dystrophy”. As Gerry said on the night, it meant so much to us to be in Bangor Town Hall receiving this award as Christopher was born only a short distance away in Bangor Hospital almost 32 years ago but also as we are now approaching his 15th anniversary in September, to receive this brings so much purpose to his life and the legacy he left behind.

Fundraising Night of Hilarious Comedy

Bangor Civil Defence Services Club recently held another fundraising night on the 21st May. It was a comedy night featuring Neil Dougan, ably supported by Noel McLaren and Brian McCarron. They were all really funny and our thanks to Neil, Noel and Brian for giving everyone a great night. Once again we thank Brian Watson and the Committee for their continuing support over the past 8 months. Special thanks again must go to Brian Cassidy who put the whole night together, not only booking the three comedians, but also had DJ Brian Walsh to finish off the night with a great disco.

Thanks to everyone who supported the event, raffle, auction and to local Bangor businesses for donating raffle prizes, especially Angie McKee, a local Bangor artist, who donated a painting for the auction. A tremendous £700 was raised. We look forward to the next event.

Josh’s 10th Birthday Fundraiser for “Chris”

Christmas 2014 was a special time for Joshua Strainger when we provided a Ppod seat for him. Then last December we received a lovely email from Josh’s mum Laura to say how beneficial the Ppod had been for Josh both at home and when he was in hospital. Some weeks ago we received another email from Laura to tell us it was Josh’s 10th birthday on the 6th May and they wanted to raise funds for the charity. They decided to ask friends/family not to buy a present for Josh but instead to make a donation to The Christopher McCollum Fund. What a wonderful gesture by Laura, Gillian and especially Josh to think of this and to play a part in helping another young person.

We sent them some charity items including the now famous “Chris” charity cap, a tee-shirt for Josh and they raised a fantastic £300. This is very special to us particularly as we approach Christopher’s 15th anniversary in September.

Thanks to everyone who supported them on the day and we send our love and best wishes to Josh.

Tray Bake Treats for “Chris” at Ulster Bank Bangor

It was great to be back in the Ulster Bank Bangor on Friday, 29th April for our third tray bake and coffee day. We are always impressed at the generousity of their customers, the interest they show in the charity and are really pleased to say a tremendous £194.17 was raised. As well as the funds raised, raising awareness on disability issues is also important to us. Our sincere thanks again to Paula Galloway, Ulster Bank for organising this, also the staff for their support and for preparing all the delicious tray bakes. Finally, a big thank you to the customers for their support on the day.

The Emerald Crew – In Belfast City Centre for “Chris”

Lisa Davis and Stuart McWilliams

Stephanie Hagan, Joanne Martin, Sasha Ferguson and David McPolin

Our thanks to the team from the Emerald Crew, Halifax Mortgage Sales, Lloyds Banking Group at The Gasworks, Belfast, who recently organised a street collection for The Christopher McCollum Fund in Belfast City Centre. It was a very wet day but they still collected £156.71 which when matched by Lloyds Foundation is a tremendous total of £313.42. As well as the funds raised to see the charity’s “Chris” caps and sashes in Belfast is very special for us. The team have another collection in Belfast on the 15th September which will be even more special as it will follow Christopher’s 15th anniversary on the 8th September. Our sincere thanks to everyone, umbrellas and all, for volunteering their time.

NICE Approve Funding for Translarna

We are really pleased to say that NICE have recommended funding for Translarna – the first ever drug to potentially treat an underlying genetic cause of Duchenne MD. Translarna will treat approximately 13% of children whose Duchenne is caused by a nonsense mutation, are aged 5 and over and still walking. The next step is for NHS England to implement the decision as soon as possible. At a previous All Party Group meeting in Stormont, which we attended, Dean Sullivan, Director of Commissioning in the Health & Social Care Board NI, said if NICE approved Translarna it would be made available in Northern Ireland. Our other wish and hope is this will also now set a precedence for any other treatments which may be found in the future. We will continue to raise funds for the Muscular Dystrophy UK Duchenne Research Breakthrough Fund which funds projects to help find a combination of other treatments for other children with Duchenne MD.

For further information please visit: Muscular Dystrophy UK

Celebrating Easter with Chicks and Chocolate

Following on from the recent Bun and Cake Sale the Emerald Crew of Lloyds Banking Group held a raffle for a special Easter hamper put together by Geraldine. With Matched Funding from Lloyds Foundation a further £266 has been raised. The lucky winner was Isleen O’Flaherty and our thanks to everyone who bought a ticket. Thanks again to Paula, Rachael, Jemma and the Crew for organising this. Their next event is a street collection in Belfast City Centre on Monday, 11th April. It is very special for us to have our “Chris” caps in Belfast for the first time so if you see them on the day, please give them your support.

Halifax Bake-Off - Beautiful Buns and Creative Cakes

What a fantastic selection of buns and cakes were on display when the Emerald Crew of Halifax Mortgage Sales organised another fundraising event to support “SpiritofChris” as their Charity of the Year 2016. We really loved the idea of the “SpiritofChris” cake and our thanks to Kristofer Gray and his wife Claire for their lovely creation. A tremendous £570 was raised. Our thanks again to Paula, Rachael, Jemma and to everyone who supported this.

Christopher’s Legacy – 15th Anniversary Year 2016

Our sincere thanks to Sarah Scott of Belfast Live for her lovely feature on Christopher’s story and The Christopher McCollum Fund. It is very special for us to see this as we approach Christopher’s 15th anniversary in September. Thanks also to Halifax Mortgage Sales at Lloyds Banking Group in Belfast for contacting Belfast Live on why their Emerald Crew have adopted The Christopher McCollum Fund as their Charity of the Year. To view the article please click on the picture below:

It was a “Grand” Night in the CD Club for "Chris"

We were again delighted to be at another fundraising event held in the Bangor Civil Defence Services Club last Friday. Firstly our thanks to Brian Watson and the Committee but special thanks though must go to Brian Cassidy for organising the night and arranging for “The Grand Camaros” to perform. They were really superb and our thanks to Gordon Thompson, Mark Brown, David Hughes and Glenn Gray for a brilliant performance. If you get the opportunity to see The Grand Camaros don’t miss it.

A tremendous £375 was raised and we thank everyone who supported the event. We look forward to the next event which we hear may be a “comedy night”.

The Emerald Crew - On The Streets of Armagh For "Chris"

Our thanks to the Team from the Emerald Crew in Halifax Mortgage Sales, Lloyds Banking Group who organised a street collection for The Christopher McCollum Fund in Armagh on St Patrick’s Day. A tremendous £244 was collected which, with matched funding from Lloyds Foundation, amounts to £488. It meant a lot to us to know that for the first time our Chris caps and sashes will have travelled all the way to Armagh. This is the first of several street collections during the year which the Emerald Crew have organised with the next one being in Belfast city centre. Our sincere thanks to everyone who volunteered their time.

Halifax Mortgage Sales “Dress Down” for "Chris"

It was great to recently receive a cheque for £1,167.00 from the Mortgage Sales Team at Lloyds Banking Group who are supporting us this year. The cheque included £547 raised from the St Valentine’s Day hamper and then a fantastic £620 from a Dress Down Day. We really appreciate this support and our thanks to Paula, Rachael, Jemma and everyone in the Emerald Crew at Halifax Mortgage Sales. Just to mention if you are in Armagh on St Patrick’s Day the Crew are holding a street collection for The Christopher McCollum Fund so please give them your support. Then following this on the 18th March they are holding a bun sale in their Gasworks office, along with a raffle for an Easter hamper which Geraldine has put together. Thanks everyone for your time and support.

Off To a Great Start at Lloyds Banking Group

What a great beginning to our Charity Partnership Year with Halifax Mortgage Sales at Lloyds Banking Group, Belfast. For St Valentine’s weekend they held a raffle for a special Valentine’s hamper, put together by Geraldine, and this raised a fantastic £547. The lucky winner was Graeme McLean and our sincere thanks to everyone who bought a ticket. Special thanks must go to Paula McAleese for all her work in organising this and who is already planning several other events.

Celebrating St Valentine’s at Bangor CD Club’s Quiz Night

It was great to be at the recent Quiz Night in Bangor Civil Defence Club who are supporting The Christopher McCollum Fund this year. This raised a further £252 and our sincere thanks to everyone who supported the event. Thanks also to Brian Watson for all his organisation, the Quizmaster Scott Harkins, who did a great job, and Michael, John Larmour and Brian Cassidy for their great musical contribution to close the night. It means a lot to us to have this local support and also gave Gerry the opportunity to talk about Christopher, the charity, equipment and Duchenne Muscular Dystrophy to a new audience. Being Valentine’s weekend part of the raffle was a Valentine Hamper which Geraldine put together and was won by Brian Muldoon who very generously put this up for auction. It raised another £40 --- bought by Brian himself. We look forward to the next event.

LoveBelfast Features “SpiritofChris” Partnership in Charity News

A big thank you to LoveBelfast for putting on their Facebook the announcement from Lloyds Banking Group about their charity partnership with The Christopher McCollum Fund. This is great promotion for us and raises awareness of our charit to a much wider audience. Our thanks again to LBG and to view the article please visit:

http://lovebelfast.co.uk/the-christopher-mccollum-fund/

Lloyds Banking Group Adopt "Spiritof Chris"

L/R Geraldine, Damian McCluskey, Paula McAleese, Jemma Stewart, Rachael Mallon and Gerry

We are really delighted to announce a charity partnership for 2016 with the Mortgage Sales Team, Lloyds Banking Group (LBG) within their Customer Contact Centre at The Gasworks in Belfast. This is great recognition for our charity. We are very impressed how LBG dedicate their support and also fundraise for charities like ours. As many as 60 staff will be taking part in "Days To Make A Difference"..”., volunteering and fundraising for us. “Days To Make A Difference” is a Lloyds Banking Group shceme where colleagues allocate a full day during their working hours to help support local causes in the community.

Damian McCluskey, Senior Team Manager at Lloyds Banking Group said “We are delighted to have formed this new partnership with The Christopher McCollum Fund. Their story has really inspired us and it is very clear that they are providing great support in our local community. Over the next 12 months we will do all we can to support them to help raise awareness and vital funds that helps further research and purchases equipment that significantly increases the quality of life of many young people”.

The “Make A Difference” scheme fits very well with what our charity does which is to Make A Difference in the lives of young disabled people and improve their Quality Of Life. We appreciate the time and effort that the staff will dedicate to us and we look forward to working with them over the next 12 months.

Gala Dinner Cheque Presentation at Stormont

Following our “A Question of Support” gala dinner in November we have now donated our cheque for £8,756.25 to the Muscular Dystrophy UK Duchenne Research Breakthrough Fund. It meant a lot to us to make this presentation at the Duchenne Research & Information Day in the Long Gallery Stormont on the 1st February and especially as Dr Marita Pohlschmidt, Director of Research at MDUK was a speaker at the event. It was then encouraging to hear Marita talk about the various projects that are currently being funded by the DRB Fund to help find a treatment, or maybe, as Marita said, a combination of treatments for Duchenne MD.

The Christopher McCollum Fund made the first official donation to this fund at its launch in 2012 when we presented a cheque for £1,000 to Marita and we are pleased to say we have now helped fund 400 hours of vital research time. Once again we thank everyone who attended the gala dinner for their support. Special thanks must go also to Geoff Goldsborough, our auctioneer, who in his own inimitable way raised £5,400 on the night. The balance of £8,756.25 will be used toward equipment.

A Christmas to Remember for Grace

We were really pleased to purchase a Topend Excelerator Trike for Grace Boyle which was supplied by Disability Needs, Belfast in time for Christmas. Grace, aged 8, who lives in Belfast has Spina Bifida and Hydrocephalus. Her condition has resulted in absent/reduced movement and loss of sensation in her lower limbs. Grace also wears foot and ankle splints to support her feet in a good position. In the past couple of years Grace has been using a hand propelled trike in Fleming Fulton school. She had the loan of the trike in the summer at home but this had to be returned to school. After receiving a letter of recommendation from her school physio and, seeing the overall benefit that this trike has been for Grace, we were pleased to purchase this for her. This will allow her to enjoy her independence with increased social participation at home which will improve her quality of life. The NHS will not provide this piece of equipment. Her mum Claire said: “I just wanted to thank you very much for Grace's bike. She loves it so much, I had one happy girl on Christmas morning.”

Many happy hours of cycling Grace

Marc Bigger

We are very saddened to hear that Marc Bigger has passed away today. Marc was aged 19 and had Duchenne Muscular Dystrophy. It was an honour for us to help provide a powered wheelchair for Marc in 2013 and in time for him to take to Paris to represent Ireland in the Powerchair Football Tournament. Who will ever forget the goal of the tournament Marc scored and which can be seen on our website. Marc was a very courageous young man who showed his courage in coming to Stormont in 2012 to tell MLAs how he felt and to try and help others. Thanks for all those memories Marc and it was a privilege to know you. Our sincere sympathy and thoughts go to his mum Marina and all the family circle.

Gerry and Geraldine

Thank You Everyone - 2015

The Fabulous 5 and Us in The Black Box, Belfast

We would like to thank everyone who has supported The Christopher McCollum Fund in 2015 either with donations, volunteering their time or supporting our events. It has been a special year in which we marked Christopher’s 30th with 30 Songs for Chris in The Black Box, The 8 Mile Walk in the Belfast Marathon and 30 Caps for Chris as part of our charity gala dinner in the Culloden. We were delighted to purchase 6 items of equipment for young disabled people and also have raised £11,650 for the MDUK Duchenne Research Breakthrough Fund. We could not have achieved this without everyone’s support.

We wish everyone a happy 2016

Gerry and Geraldine

Life Changing PPod Aids Josh’s Recovery

We received this lovely message and photos from Josh Strainger’s mum Laura and want to share it with everyone. Laura said “It's been one year since our not-so-little man received his PPOD specialist Chair from The Christopher McCollum Fund!.. This year Josh has had his second hip surgery and due his 3rd at the start of the new year. The PPOD has been a life saver before and after surgery. It was the only mobility chair he could use when in his Hip-Spica cast for 6weeks. His orthopaedic surgeon in the Royal hospital has also suggested (after seeing the chair) that it be bought for the surgical ward for children recovering from hip surgery! She loves it! Josh is just so comfortable in it, it has honestly changed his life! Thank you again. We will never forget your generosity!”

Thanks Laura for letting us know how beneficial the PPod has been for Josh both at home as well as hospital and how this has improved his quality of life over the past year. We wish you all a good Christmas and hope Josh’s surgery goes well.