Monday 4 October 2010
2010 President's Awards: Leading by example
The 2010 President's Award were presented at the Muscular Dystrophy Campaign's National Conference in September recognising the people who have achieved astounding feats in the fight against muscle disease. Read on for the full details of the winners of this year's awards.
Inspiring Person of the Year – Paul McIntyre
Among the Muscular Dystrophy Campaign’s 130 London Marathon runners this year was one extra special attempt at the legendary 26-mile route. Twenty year old Paul McIntyre from Callander, Perthshire has Becker muscular dystrophy and had never previously attempted to walk anywhere near as far. However, Paul completed his own personal challenge by completing the course inside two days – a full day ahead of schedule!
Refusing to use a walking stick to help him on his way, Paul conquered the route unaided and arrived at the finish line at 6pm on Monday 26 April, some 28 hours after most runners had completed the route. As well as this truly inspiring achievement Paul has also been involved in the Trailblazers investigations this year, reporting on the accessibility of leisure services to improve facilities for people with muscle disease in Scotland.
Fundraiser of the Year – Roger Stewart
There are many great supporters and fundraisers who do a magnificent job to raise money for the Muscular Dystrophy Campaign but 59-year-old Roger Stewart from York has gone one step further, turning his love of classic cars into a business dedicated to raising money for the charity.
After realising a lifelong dream by buying a 1968 Mk2 Jaguar, Roger decided to join forces with close friend Chris Tindal, owner of a 1965 S type, to start Reece Wedding Cars, providing a chauffeur service for brides across North Yorkshire. Named after Roger’s five-year-old grandson Reece, who has Duchenne muscular dystrophy, every penny of profit made by the thriving company is donated to the Muscular Dystrophy Campaign. Roger works tirelessly, giving up almost every weekend to raise as much as he can, motivated by his love for his family.
Young Person of the Year – Jonathan Gilmour
Jonathan Gilmour, 23, from Hampshire, has forged an outstanding academic career and is a shining example of what can be achieved with a great deal of dedication and determination.
Diagnosed with Duchenne muscular dystrophy at the age of seven, Jonathan has never allowed his increasing physical difficulties to stand in his way. Achieving a stunning nine A/A* grades in his GCSEs as well as three grade As in his A-levels, he was also the only student at his sixth form college to be entered for the academically challenging Advanced Extension Award in Religious Studies, being awarded a very rare Distinction.
What makes this achievement even more remarkable is that Jonathan underwent spinal fusion surgery mid way through his studies. Such is his dedication to his studies, Jonathan managed to persuade his orthopaedic surgeon to schedule his spinal surgery in the summer holidays so that he only missed two weeks from school despite spending 10 days in intensive care after post-operative complications.
After leaving school, Jonathan was accepted at the University of Cambridge, St John’s College, to study for a degree in Theology and Religious Studies. As before, Jonathan triumphed, achieving a First Class honours degree in 2008. Since then he has completed his Master of Philosophy degree in one year and is currently on the first year of a PhD in Jewish philosophy. As well as these remarkable achievements Jonathan was awarded the highly coveted Theological Studies Prize for the University of Cambridge on two separate occasions and was also awarded the Nowell Rostron Scholarship in 2008. Jonathan’s current aim is to complete his PhD in the next few years, travel to Israel and America and to become a university lecturer.
Campaigners of the Year – Phillippa Farrant and Ray Thomas
A year of incredible achievements in our campaigning work led the judges to decide that they could not split the outstanding candidates in this field, resulting in Phillippa Farrant and Ray Thomas being named as joint winners of this category.
Phillippa, from Eastbourne, is mother to 18-year-old Dan, who has Duchenne muscular dystrophy. Phillippa battles constantly for Dan to get the medical care he needs – fighting for the hydrotherapy which helps him to breathe more easily and for a wheelchair and the other specialist equipment he needs to be independent.
As the Chair of the South East Coast Muscle Group, Phillippa has campaigned extensively to improve services in the South East. She has repeatedly spoken at Westminster to raise awareness of the issue and has appeared in local and national press to promote the campaign.
Phillippa is also the Chair of the Duchenne Family Support Group, a national charity which provides support, information and advice and organises holidays for 500 families nationwide affected by Duchenne muscular dystrophy. Despite all this, Phillippa somehow finds time to fit in all her other family responsibilities as well as working part-time.
Ray Thomas has campaigned tirelessly for the Muscular Dystrophy Campaign since the late 1960s. Having two sons with Becker muscular dystrophy, both of who have since tragically passed away, Ray has fought to improve the quality of life and standard of services for everyone living with muscle disease.
Outraged by the lack of vital support and specialist care available to his sons that could have drastically improved their quality of life, Ray has been at the core of an in-depth inquiry by the Welsh Cross Party Group for Muscular Dystrophy in the Welsh Assembly. In recognition of his efforts, the final report of the enquiry has been named after him – The Thomas Report.
Ray has become an inspirational figure, giving hope to other families living with muscle disease. They know not to give up fighting and to continue fundraising and campaigning. Thanks to Ray’s tireless efforts, families like his living in Wales will soon have access to new NHS neuromuscular services that were sadly unavailable to his own sons. His campaigning work will be his sons’ legacy that no one else with muscular dystrophy should be ever denied essential medical and social care.
Carer of the Year – Matthew Morris
Matthew Morris, a Year 4 pupil from Warrington, has shown himself to be the best brother anyone could wish for this year by standing up for younger sibling Josh.
Four-year-old Josh was diagnosed with Duchenne muscular dystrophy two years ago and, ever since then, Matthew has helped his mum and dad look after him. When Josh started primary school last year, Matthew was devastated to hear other children calling Josh names because of the buggy he needs to use.
Showing incredible bravery, Matthew stood up in front of his entire school to read out a letter he had written explaining about his brother’s “poorly muscles” and why it was upsetting to hear him being called names. It’s always scary to make a stand in front of other children so to do this in the school assembly bears testament to the love and care that Matthew has shown for his little brother.
Clinician of the Year – Dr Ros Quinlivan
Over the past twelve months, Dr Ros Quinlivan has shown huge dedication to her patients with unparalleled levels of commitment to providing and improving care services.
Dr Quinlivan, who is based at the Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry, Shrophire, received plaudits from her patients who acclaimed her devotion to going well beyond the normal accepted levels of care and support. Along with her specialised team she has fought her patients’ corners when requests for equipment, wheelchairs and house adaptations are going unheeded, smoothing what can be a difficult and process. Patients often receive personal calls from Dr Quinlivan to check that referrals and requests have been appropriately followed up.
Dr Quinlivan has also been part of the West Midlands Specialised Review of Neuromuscular Services, working tirelessly to promote the needs of people with neuromuscular conditions. She was proactive in urging the implementation of changes that were needed to reduce unplanned emergency admissions. She also played a key role in the negotiations with NHS decision-makers in the West Midlands that led to a £400,000 investment for new consultants and care advisors in the region.
Research Ambassador of the Year – Helen Stockdale
Helen Stockdale is the first recipient of our Research Ambassador of the Year award as recognition for her tremendous work involving families affected by muscle disease in our research grants programme.
A mother of a son with Becker muscular dystrophy, Helen has shown outstanding commitment in ensuring that families like hers are an integral part of the research funding process. She has played a vital role in the Natural Ground Project initiated by the Association of Medical Research Charities, helping to develop a model for our charity for patient and public research involvement.
Helen has taken up the role of the chair of the newly established Lay Panel, which evaluates research grant applications and ensures that in addition to the scientific assessment the view of our families is considered. Thanks to her efforts, families will continue to have a greater say in the research work that we fund.
Junior Fundraiser of the Year – Jack Franklin
Thirteen-year-old Jack, from East Yorkshire, became the star of one of our most successful ever appeals this year, raising in excess of £15,000.
Jack’s honest and emotional letter captured the hearts of almost everyone who received it as he described what life is really like for a boy with Duchenne muscular dystrophy. Telling of his love of computer games and swimming, Jack revealed his excitement about receiving a wheelchair but also his hopes that a cure could be found to make life better for everyone with muscular dystrophy.
Jack and his mum, Tracey, have also been busy drumming up local support, making sure that Jack’s letter was delivered to every fire station in Yorkshire to collect even more donations.
Family of the Year – Richard, Gillian, Austin and Esther Atkinson
The Atkinson family has given an extraordinary amount of time to the Muscular Dystrophy Campaign’s fundraising efforts over the past year, throwing themselves wholeheartedly into running the charity’s That Glorious Noise classical concert series.
Richard and Gillian were heavily involved in the planning and organising of the four concerts featuring Russell Watson as well as playing a starring role on the day, with Gill’s choir, The Rodillian Singers, taking part in each concert while Richard acted as compere for the events. Even Austin, who has congenital muscular dystrophy, took to the stage at Meridian Park as Russell Watson led the 1,500-strong crowd in singing Happy Birthday to celebrate his fifth birthday!
The Atkinsons have also used their contacts to find sponsorship and advertising for the events as well as giving media interviews and providing box office support for the concerts. They have given up huge amounts of time to organise a huge series of events this year and are worthy recipients of the Family of the Year award.
Support Group of the Year – FSH-MD Support Group UK
The FSH-MD Support Group has had a tremendous year, celebrating its 25th anniversary in style by growing its membership, adding new groups and introducing new events to its calendar.
Having hosted its first Get Together in April 2009, the group has since held its Autumn Get Together in Oxford and the recent Mega Spring Get Together in Haydock that was attended by 67 members. These events offer a fantastic opportunity for people with FSH to chat to others and share tips on managing their condition as well as finding about more about campaigning events and the facilities at the NeuroMuscular Centre in Winsford.
The group has also expanded this year with the new East Midlands Group meeting for the first time in April and further groups in the pipeline across the country. The group works closely with the Muscular Dystrophy Campaign, with Chair Karen Bayliss playing a key role in campaigning to secure £400,000 worth of new investment in services for the West Midlands.
Volunteer of the Year – Michael McClintock
Of our many volunteers to have supported fundraising events over the past twelve months, few can have given as much time, dedication or passion as Michael McClintock has in promoting the Four Course Classic throughout Northern Ireland.
Michael volunteered full time for more than four months to make sure that 95 percent of golf courses in Northern Ireland were signed up to our golf marathon event. Travelling the length and breadth of the country to recruit players and spread the word about our huge fundraising event, Michael also managed to convince top professionals Rory McIlroy, Darren Clarke and US Open winner Graeme McDowell to give their backing to the event.
Michael, who has facioscapulohumeral muscular dystrophy, also did his bit to raise awareness of the Four Course Classic through the media, calling every newspaper in Northern Ireland to secure some amazing coverage as well as appearing live on BBC Radio Ulster and driving a Golf Monthly journalist across the country and back again so he could complete a Top Gear-style challenge to promote the event!
Lifetime Contribution Award – Joan Taylor
Joan Taylor started fundraising for the Muscular Dystrophy Campaign in 1961 and, over the following nearly 50 years, has led the Kings Heath branch to raise a staggering £350,000.
Along with husband John, who was diagnosed with limb girdle muscular dystrophy in the late 1940s before having that subsequently revised to Becker in the 1980s, Joan has been a driving force behind one of the charity’s most successful branches over four decades.
Over the years Joan has found time in her busy schedule to run jumble sales and summer fetes, carry out street and store collections, organise dances, book sales, doll sales and much more. Joan has tirelessly campaigned for the charity; whether on the streets or over the phone she always managed to make things happen. Despite this, Joan modestly claims her only talent to be hard work.
Early last year Joan suffered a stroke and, soon after being released from hospital, she fell over and broke her wrist. Following this, she reluctantly relinquished her place on the branch committee. However, in just a few months she was back out collecting at Sainsbury’s, taking money at a race night and selling tombola tickets at a summer fete. With the Taylor dynasty continuing with her daughter now running the branch, Joan’s legacy will live long and she is a deserving winner of the Lifetime Contribution Award.
Outstanding Lifetime Contribution Award – Alexander Patrick
A great many of our readers will have had their lives improved thanks to the generosity and commitment of Alexander Patrick, founder of the Joseph Patrick Trust and an inspiration to us all with his lifetime’s devotion to the Muscular Dystrophy Campaign.
Set up in 1986, the Joseph Patrick Trust has awarded over £3 million to more than 5,000 children and adults with muscle disease to help fund life-changing equipment like powered wheelchairs and electric beds. Named after Alexander’s late father, who was a founder member of the Muscular Dystrophy Campaign, the Trust is a fitting memorial to a man who did so much to help the cause of those who are affected by muscle disease.
Aside from the financial support provided to our grant giving trust, Alexander Patrick has shown steadfast support of the charity’s wider aims as a former Vice Chairman of the Trustees and current Vice President of the Muscular Dystrophy Campaign.
The Patrick family has this year made a further contribution to the fight against muscle disease with Alexander’s nephew, Julian Pritchard, providing the venue for the new NeuroMuscular Centre in the West Midlands through his company PMG Investments. Alexander is playing a leading role in the development of this vital new facility.