What people say about us
Lord Walton of Detchant KT TD MA MD DSc FRCP Honorary Life President, the Muscular Dystrophy Campaign:
I think this latest research is an exciting development and it is one which I am sure will take ahead research in this very challenging field and will accelerate it greatly. Now really for the first time since I worked on this condition more than 60 years ago, then for many years afterwards, I am really excited about the prospects of effective treatments being developed for these neuromuscular diseases, which are so devastating in the effects they have on the individuals affected by them and their families."
Professor Nick Wells, Duchenne muscular dystrophy researcher at the Royal Veterinary College:
People like me are desperately grateful, and although it has been a struggle and some time coming I think we are getting really quite close to having something that is clinically useful. And I certainly hope that we'll see with the existing trials and planned future trials that we'll see effective treatments that will make a clinical difference coming out in the not too distant future."
Professor Doug Turnbull, mitochondrial disease researcher at the University of Newcastle:
We've now had funding for a research associate for a number of years from the Muscular Dystrophy Campaign and it is an interesting question where would we be without the Muscular Dystrophy Campaign funding? The basic answer is we wouldn't be anywhere as they are the funders that have really gotten this research off the ground. It was a basic idea about six years ago and they have funded from the beginning. More recently we have had significant help from other sources like the Wellcome Trust and the MRC because this has now become a much bigger research effort requiring support from research nurses and other people in the labs so the Muscular Dystrophy Campaign made a massive effort in getting this off the ground.
The Muscular Dystrophy Campaign funding for our research is absolutely crucial, its been crucial for a number of years. One of the really important aspects about the muscular dystrophy research is that they are prepared to fund research at a very early stage of development. So they're prepared to fund ideas that might ultimately help patients with neuromuscular disease and I think this is a very innovative approach.
Professor Martin Bobrow CBE:
After years of investment by the Muscular Dystrophy Campaign we now understand a huge amount about the causes and effects of many types of muscular dystrophy. This means we can now focus our energies on possible treatments and cures once considered unobtainable.
We know we can achieve what we set out to do. We know that we can achieve breakthroughs in our research and that effective treatments, and perhaps even cures, can become a reality. What we need is the long-term income that helps us plan and sustain our future work.
Professor Francesco Muntoni, researcher at the Imperial College and Hammersmith Hospital:
Even five years ago, it would have been impossible to think about treatments. Now, we're not only thinking about it but I'm hopeful that we may be able to produce something in the next ten years.
Professor Dame Kay Davies, researcher at University of Oxford:
I believe this (utrophin research) currently offers the most promising avenue for the development of a treatment for Duchenne muscular dystrophy.
Michaela Hollywood, Trailblazer Northern Ireland:
Part of the Muscular Dystrophy Campaign's support is a specialist Care Advisor in each region. The Care Advisor post in Northern Ireland became under threat in January 2011 as the NHS could not pledge their funding for the foreseeable future. Personally, I was outraged to find out that the post was even being considered as a potential cut to services. Although those from the outside could see this as a so-called luxury post, it is a necessary front line medical service that every patient with muscular dystrophy has access to their Care Advisor. In recent years she had provided me with details of a Cough Assist machine which has reduced my chest infections from one every three to four months to one per year. Perhaps most importantly, when myself and my sister were diagnosed they could give my whole family the needed support and information they needed about disability.
Therefore, I worked with the Muscular Dystrophy Campaign to ensure that we got to keep our Care Advisor post. One of the key parts of the campaign was that 2,000 people in Northern Ireland and the Isle of Man would be left without this specialist support. Working with the press office and campaigns office was a pleasure. They gave me the support and tools to bring the situation to the attention of the local press and the general public. BBC Northern Ireland picked up the story and ran it on both their TV output as well as BBC Radio Ulster. Northern Ireland's largest local paper the Belfast Telegraph also ran the story as a feature which took up a full page in the issue.
The excellent media coverage was then combined with behind-the-scenes negotiations with the then Minister for Health Michael McGimpsy. Through doing this we were able to secure funding to continue the Care Advisor post, continuing support for all those with muscular dystrophy in Northern Ireland.
Suliaman Khan, Trailblazer:
Since I joined the Muscular Dystrophy Campaign Trailblazers my life has changed for the better. I feel passionately about the issues that the Trailblazers campaign on, and the group has given me great opportunities to make my voice heard and to meet so many inspiring people along the way. As a young disabled person it's important to be part of an organisation that understands that I want to go to work, I want to go to university and that I want to participate in society. The Trailblazers fight for not only people that, like me, have a muscle-wasting condition, but all young disabled people.
I can see the positive impact the group has year on year. The number of Trailblazers just keeps on increasing and we seem to have more coverage in the media with each campaign. I would recommend it to anyone to get involved.
Ros Quinliven, Consultant Paediatrician, Birmingham Children's Hospital:
Without the support of the Muscular Dystrophy Campaign in the battle to treat muscular dystrophy I dread to think where we would be. There have been tremendous advances in both medical care and translational research in recent years which have transformed natural history of Duchenne muscular dystrophy.
Jeanette Pearson about Jan Smith her Neuromuscular Care Advisor:
She's an oracle - without Jan (Neuromuscular Care Advisor), Darrell would not have gotten his adapted bed or his wheelchair which means he would not have his independence. She also provides us with support and advice on respite care. She is a one-stop expert on muscular dystrophy, and it would have been so difficult to manage without her.
Wilma Stewart, NHS Neuromuscular Care Advisor Glasgow:
Since my employment with the Muscular Dystrophy charity almost three years ago it has been a privilege and pleasure to be in the position as Care Advisor Scotland offering emotional and psychological support to all patients and families living with a neuromuscular condition.
The support from the charity has been highly valued in this time and as caring professionals we all have the same vision to "change attitudes and improve the lives of people living with muscular dystrophy and related conditions.
Wilma Stewart, NHS Neuromuscular Care Advisor Glasgow:
With the current restraints on economic funding it is so rewarding working within a charity which has kept the focus solely on improving the quality of life within this client group by ensuring there are increasing numbers of Care Advisor posts across the UK, ongoing research into Exon skipping and funding expensive equipment. I believe strongly, despite the economic climate we are now facing, the Muscular Dystrophy Campaign will continue to commit to deliver and improve the high standard of care and support to all families who have a muscle or nerve condition.
Bernie Gamble, School Welfare Officer, helping a young man with Duchenne:
At a time, when I had nowhere to turn, the support services team were there to help. Without their support, I dread to think what might have happened."
Jon Hastie, 30 year old with Duchenne who was struggling to live independently:
I would encourage anyone who is facing a similar fight to get in touch with the MDC - their help and expertise have proven invaluable in allowing me to continue to enjoy my life, my work and my independence.”
Shona Davison, Sheffield, who has myotonic dystrophy (via Facebook)
Thank goodness for the Muscular Dystrophy Campaign! It can be hard having to fight your corner all the time.”
Dr Eleanor Sutton, King’s Lynn, Clinical Psychologist:
I just wanted to write and say how incredibly impressed I have been with my recent experience of getting in touch with the Muscular Dystrophy campaign. You have been so helpful, and the information pack I requested yesterday (that arrived this morning!) is fantastic.”
DanielvsNHS on Twitter:
@CampaignsMD - always helping out and giving advice, not sure what we would all do without you.”
Indra Wignall, Preston, who has Mitochrondrial Myopathy
Got a letter through today, I have everything back again! I'm now on high rate mobility and middle rate care! Thank you so so much, I have my life back now. I'm actually shaking I feel so good! They haven't said anything about any back payment, but the extra cash each month is going to make so much difference! I could not have done this without you and cannot thank you enough!!!!"
