Newsletter: December 2009

This issue there is news from the Myotubular Trust about their new website, an explosive night at the House of Commons, their second call for research projects and the story of one of a range of seven very special christmas cards being sold this year to raise funds for research. There are also some lovely stories from CNM / MTM families living in the UK, USA and Australia, plus a round up of some forthcoming events that you can become involved with.

The Information Point web shop has now raised £685.75. If you still have christmas shopping to do, please pay the shop a visit. You will find many of the high street stores there and many others, selling a range of products including books, cds, clothes, holidays, electricals and financial products. Commission rates vary between suppliers but every single purchase made at the web shop generates something, which raises money for research, meaning that every penny counts.

The Information Point on Facebook now has 174 members. If you are not a member of the Facebook group, please take a minute to look at us up and leave a message about how you are affected by CNM / MTM. You can also upload photos and connect with other families by taking part in discussions on the discussion boards.

The Facebook cause page has 818 members, who are helping to raise awareness of CNM / MTM. If you are not yet a member here but would like to help raise awareness, simply visit the cause page, where you can become a supporter, invite your friends and family to become supporters also and show your support by adding a badge to your profile page showing the Information Point as your featured cause.

A big thank you to everyone who has taken the time to write something for this issue. So many of us are told when we get our diagnosis, how incredibly rare it is and that there is next to know one else with the condition and whilst there is no arguing the fact that this is a rare condition, being able to show the diversity of people from around the world who are affected, really helps dispel the notion that we are alone and educates the wider world about the complexity of the condition and what living with a diagnosis of CNM / MTM means to different people. Every story helps to raise awareness and shows someones reality of living with CNM / MTM. Thank you to all of you who have taken the time over the past year, to share a part of you and write something for the newsletter or the website.

If you have any comments about this issue of the newsletter or the website, please get in touch or complete our feedback form and if you have any ideas for future issues or things you would like to share, say projects, meetings, fundraisers, get togethers, milestones, accomplishments or anything else which you feel would be of interest to the community, please get in touch about these also.

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To keep up with changing web trends; the expectations of discerning web users and also the charity's growing need to fulfil its communication and education objectives, Myotubular Trust decided earlier in the year that they were ready to give their website a fresh new look.

The aim of the new website was to appeal to all types of visitors; from their supporting family and friends, to the medical professionals to one-off visitors, in essence giving something for everyone. As well as continuing to include some of the important and popular features of the old website, and making it easy to navigate around the website, Myotubular Trust put together a tick box list of 'wants', including:

Richard Netherclift at Insignia Creative in Torquay, Devon had a big brief to follow, but he and the enthusiastic web team helped to deliver, what we hope you will agree is a refreshing and stylish looking website with some clever features. Richard said 'Charities and funded organisations need maximum exposure to help them raise money and often websites are a great way to help. The new site relies strongly on imagery of affected children and their families but also exhibits images of people's great fundraising events and meetings. The site has been designed so that it can be managed and updated largely by the Trust themselves, with secondary help from ourselves when required. We were very happy to help Myotubular Trust develop a new site'.

Myotubular Trust are always looking for new ways to keep their website relevant and fresh, so if you have any feedback about the current site, or would like to make any suggestions for inclusion in the future, please contact Melanie Spring. Furthermore, if you are a family or individual affected by myotubular myopathy or centronuclear myopathy and would like your story included on the website, please do contact the Trust.

The Myotubular Trust was delighted to have been joined for a great fundraising reception at the House of Commons by many wonderful guests on what proved to be a most memorable night.

Almost 100 guests took a guided tour of the House of Commons before the reception began. The tour proved to be incredibly popular - many guests said that it was one of the highlights of the night and that it was a great introduction to a great charity event that followed.

The event was supported by the host, Peter Ainsworth MP, Mark Damazer, Controller of Radio 4, who compered the night so beautifully and Stephen Pollard, political editor and journalist, who kindly came along to speak.

The support and generosity of the guests resulted in excess of £31,000 being raised on the night; a figure way beyond the Trust's expectations. This of course, would not have been possible had they not received such very special auction packages and raffle prizes, all of which were donated so generously by supporters with a personal link to a child or family whose lives have been affected by myotubular myopathy.

The Trust send their heartfelt thanks to each and every one of the guests, speakers and supporters for joining them and making the evening such a success.

If you would like to and read more about the evening and view photos of the event, please visit the Myotubular Trust website.

The Myotubular Trust is now holding a second call for research projects that will help find a cure and / or a treatment for any of the three types of myotubular myopathy (congenital X-linked recessive; congenital autosomal recessive; autosomal dominant), focusing on research that would not generally be funded by public or industrial funding sources.

Application forms can be downloaded from the Myotubular Trust website. Completed applications must be received by close of business Friday 18th December 2009 to be considered for the anticipated awards in April 2010.

Any questions relating to this call for projects should be directed to the Myotubular Trust.

This year the Myotubular Trust are selling their own specially designed Christmas cards. Each card has been designed in memory or in honour of someone with myotubular myopathy with the aim or raising awareness and money for research. Sarah Smith has designed a card called 'The Message' in honour of her nephew and below she writes about her design.

I was really delighted to be able to design one of the Christmas Cards for the Myotubular Trust this year. My Christmas card is my version of Botticelli's famous Italian Renaissance painting 'The Annunciation', which I have renamed 'The Message'.

It has been painted in oil on board. I hope it helps to raise a great deal of awareness about my nephew's muscle condition, x-linked myotubular myopathy and helps to spread the message that a cure or treatment is within reach.

I graduated this year as a Master of Decorative Art. My work currently involves working in hard materials such as glass, steel and ceramic. It is inspired by nature, particularly the study of the movement of water and the human response to colour and I seek to reflect and bend light and create interesting shadows and patterns and use colour to reflect the natural environment. The artwork I produce is totemic of the seen and the unseen world and is largely designed for an outdoor aesthetic for garden, water and wall sculpture but it looks equally beautiful inside.

For more information about Sarah's art work which starts from £30, please email her at circadian.studio@ntlworld.com. Sarah has kindly agreed to donate a 20% commission to help research for her nephew's condition if you mention the Myotubular Trust when purchasing her artwork.

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In early 2008, at the age of 12, when most of his friends were finding a new teenage independence; Zak was losing his ability to walk and weight bear all together. Zak has x-linked myotubular myopathy but was born luckier than many children affected by the condition in that he never required ventilation, and he even learned to walk at the late end of 'normal'.

We all held out so much hope that he would continue to be able to walk and move around by himself into adulthood. But sadly, at a time when his peer group was becoming more confident with a new found freedom of adolescence - our son Zak was becoming even more limited and trapped by his weakened shell. Not being able to walk to go somewhere, to get things for himself. and not even being able to self-propel his manual wheelchair meant Zak had to begin to ask us for just about everything. Even if he wanted the remote control for the tv; even if he wanted to go to another room in the house; and even if he wanted to go to the bathroom. Although Zak, as ever, took this mostly in his stride, always asking so politely and with a big smile - it was a completely heartbreaking new situation for us all to face, as we tried to as much as possible to keep Zak's spirits high and positive about his physical deterioration. We all realized that the only way that Zak would regain any of the freedom he once enjoyed so much, and even feel some of the independence most of his teenage friends took for granted; was to have a powered wheelchair.

So Zak was put on an NHS waiting list in early 2008 by his physiotherapist, and to this very day - he still hasn't got an NHS powered wheelchair!

But the wonderful news is that in October 2009, Zak benefited from the MDC / Tesco Equipment for Children Campaign and he received a beautiful all-singing-all-dancing Groove 'Quickie' Power Wheelchair, costing £9,000 (the price of a family car!) which was paid for in its entirety by the campaign!! This was like a ray of sunshine in our lives - we felt like we had won the national lottery and hit the jackpot all in one go - the joy both Zak and we felt too wonderful for words!!

Since 1988, Tesco has chosen a different charity every year to be the focus for staff fundraising. In that time, Tesco staff have helped to raise over £33m for various charity partners. Recent charities to have been selected include Marie Curie Cancer Care, British Red Cross, Whizz-Kidz and Age Concern. Tesco staff are encouraged to raise money for the Charity of the Year through a variety of fun and exciting events. The Tesco Charity Trust then adds 20% to money raised by staff. This year they have partnered with Muscular Dystrophy Campaign to buy equipment for children. They hope to raise £3 million in total.

The process of applying to the Muscular Dystrophy Campaign (MDC) for equipment is just so easy; you can apply online at their website or offline by downloading a form from their website or asking them to post you one. We were one of the first families to complete the form back in March this year. The form itself was like a breath of fresh air - very straightforward and easy - it literally took a matter of minutes to complete - certainly not like all the other lengthy forms we seen provided by many other charities - some of which are 20 pages long! The MDC / Tesco application does not ask for any financial information, it is not means tested; and you have the freedom to choose any piece of wheelchair equipment that your child needs, and from any mobility equipment supplier. This is essential - because everyone's needs are different and what suits one person doesn't necessarily suit another. All they need to see is that your child with a neuromuscular condition has a very real need for the piece of equipment. The administrative side of caring for a chronically sick child can be time consuming and involve a lot of form filling, so it was a refreshing change that MDC / Tesco had made the application process so simple!

The MDC / Tesco application wanted to know about Zak's condition and how it affected him, whether or not he currently had a powerchair or manual chair and whether he had been given an NHS chair or was on a waiting list. They also wanted the full details of the type of wheelchair he wanted, and as Zak had already gone through a lengthy process of selecting a chair from a local supplier with the help of his occupational therapist, this information was readily available. Zak's Occupational Therapist and Physiotherapist sent through a supporting document with our application, and within just a few weeks, we were told that the MDC / Tesco Equipment for Children initiative would pay for 100% of the cost of Zak's powerchair .... to say we were overjoyed with this news is an understatement!! All we had to do now was to sit tight and wait for money to become available in our area so that we could place the order - simple as that!

When the money was available, MDC wrote to us again and asked us to get the powered wheelchair suppliers to submit an invoice. Fortunately for us, our suppliers were able to get hold of the chair quickly, and were also willing to give Zak the chair ahead of the invoice being paid so we didn't have to wait any longer than we needed to. We were so excited, and relieved that the process was so easy, and relatively quick - especially because Zak's chair had become such an urgent need in his life.

We are so grateful to MDC and Tesco for giving Zak back his freedom and enabling him to feel and taste some independence like any other regular teenager. Zak just loves his chair - it is fully admired by his mates and he is just delighted that he can keep up with his friends at school; raise the seat so that he can reach the books on the high shelf in the library, flick a button and rest his back when he's feeling tired or to watch a film; and chose wherever he wants to go without the need to ask someone. This piece of equipment has had a HUGE impact on his life, it enables him to participate fully in 'normal' everyday life and has given him back his confidence.

My family would like to thank the Muscular Dystrophy / Tesco Equipment for Children Campaign for buying the chair, and Vicky Hefford, OT and Promobility, Cornwall for helping to choose the right powerchair for Zak.

Due to this high demand MDC have temporarily closed their grant rounds to process current applications but will re-open them on 1 April 2010, so apply early to avoid disappointment.

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Tracey Bass is a manifesting carrier of myotubular myopathy. Over the summer she attended an Expert Patients Programme, which is a free self-management course providing tools and techniques to help people take control of their health and manage their condition better on a daily basis.

I recently attended an Expert Patients Programme, which I saw advertised in my local health clinic. I found the programme very useful as I was at a particularly low time and got a new insight into the problems faced by sufferers of all sorts of conditions, particularly the feelings of frustration which seemed to be highlighted by everyone. The course is available to anyone who has a long term condition and there are also individual programmes catering for carers.

The programme consists of 6 consecutive weekly sessions of about 2.5 hours duration and is attended by approximately 15 people. It is led by two course tutors who themselves have a long term condition and is designed to help you gain a better understanding of your condition, the impact it has on your life and provide support and confidence to help take control of your health. It covers areas such as health and fitness, confidence in dealing with medical professionals, managing pain through breathing and other exercises and communicating with friends and family.

Anyone interested in attending a course should have a look at the Expert Patients website. You don't have to be recommended by a doctor, just phone up the local head office (just give the website your post code and it will locate it for you).

I'm so glad I gave it a go as I now have several new friends who all keep in touch and I organise a get together once a month for a meal and a natter. I've even put an application in to become a volunteer tutor. So go ahead - you have nothing to lose!

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Allie Welter is 13 years old and lives in Minnesota, USA. Her brother Andy has MTM. Recently for her language class, Allie had to write an essay on something or someone close to her heart - she chose to write about Andy. Allie got an A+ for her work which can be found below.

My 8 year old brother Andy isn't like all of your irritating little siblings. He doesn't "pull my hair" or steal my belongings and he's the exact opposite of annoying. I find / make the time to appreciate what a wonderful, sweet boy he is. Cars, trucks, video games, and lots of other boy things are his favorite kind of stuff. He's into going up and saying, "Hello", to every stranger who passes him by. It's hilarious to watch him and some old lady he just met strike up a conversation. Sometimes the good things cover up the bad in a heavy blanket, so well that I barely remember about his disability.

His shiny blue wheelchair is like the muscle in his legs as it takes him at 5 miles per hour around his school. Because of his condition, he learns slightly slower than some other kids his age.

He also has to have a ventilator to help him breathe. His rare medical disorder is called MTM and it gave him limited muscle in his arms and legs. Brain deterioration was also a problem when he was younger; so bad we thought he wasn't going to live.

These flaws don't affect his spirit at ALL though! Andy's got a sense of humor, so huge on the funny scale that he can turn frowns upside down. He can bring the sun out from behind dark gray, icky clouds on a rainy day. He can brighten even the grimmest person's mood. He can ... well I could go on forever with this list, but I think you may be starting to get my point. INSPIRING is most likely the #1 word on my list of words that describe him. Even after all the surgeries, he managed to keep that grin glued on his face. I'd never really wondered what it would be like to meet other kids with MTM; kids like Andy. I guess I'd just kept on telling myself he was one of a kind. There was no one out there who experienced the same hardships that he did. That was simply my opinion until my mom spoke to me of the MTM / CNM (a condition much like MTM: it's not as severe though and girls can have it too) Family Conference.

Facebook had brought families much like mine together. So many other kids face dreaded MTM and CNM and I had had no idea! My mom had met 50 or so families from Facebook! So many were found that several people were able to schedule a conference in Houston, Texas where we would be able to meet each other! The 1st EVER MTM / CNM Family Conference. Just saying those words makes me smile. I just can't help it!

There was only one problem though. Since Andy gets sick too easily, he couldn't come since the H1N1 virus was buzzing around, we can't take any major risks. He probably would've loved it though! The wheelchair races through the lobby. I could just see the grin on his face when he crossed the invisible finish line. He would've loved it ... Well since he couldn't come, I had to enjoy it for the both of us. That was the easiest thing of all. Meeting everyone there was like déjà-vu the whole time: like I was meeting some old friends / family that I hadn't seen in ages. Amazing was the word to describe meeting all of these kids with MTM. Seeing how much they were like Andy only made me miss him more. They were all so similar; yet so different at the same time.

When you live with someone who has a disability, it's like their problems become yours and you learn to understand the lessons that most teachers don't teach you. You learn to become a better person and not to be so judgmental on the outside, but more on the inside. Being selfish is a hurdle that you can now easily jump over when you figure out how simple your life is compared to many others in the world. So next time you come across someone you don't know like my brother, or maybe someone without a disability, remember: "Don't judge a book by its cover. Once you start reading, the text inside it might be the last thing you'd expect".

Well done Allie on your excellent grade and thank you for sharing your work with the Information Point.

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In January 2010 Jackson Riley who has MTM will be joining friends and family participating in the MDA Stride and Ride at the new Dallas Cowboys Stadium, in Arlington, Texas, walking and rolling to raise money for research and MDA Camp.

Jack will be team captain for his team which will be called 'Jack's Wish on The Star Team'. 'We chose this name because we're wishing on 'The Star', the Cowboys Star' Jack's mum Jona explains. Our family has been Cowboys fans since our parents and our parents parents, so we thought that was kinda cool. Our goal is to raise $1,000.00 and we are looking for people to sign up and walk for him, or donate $$. All the money goes to research and MDA Camp, and all that good stuff'.

For more information, visit Jackson's Ride and Stride page where you can also make a secure, online donation.

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Josiah Robinson will spend Christmas 2009 in hospital; however, Josiah's parents, Cecilia and Shane are determined to celebrate Christmas all the same. Below Cecilia writes about their plans for the big day and about the very special painting she has created for Josiah to make his Christmas extra special.

Ever since Josiah was born, we have been told that his life would be short but Josiah has exceeded expectations and climbed every mountain in his way. Although Josiah has spent best part of this year in hospital, he has overcome so much, from having a cardiac arrest, to having a tracheostomy and J-tube procedure.

Shane and I strive to make every day a blessing for Josiah and Christmas is no exception. This will be his second Christmas but instead of being at home he will celebrate it in PICU again, so Shane and I have decorated his cubical and plan to give Josiah a magical Christmas there.

I thought that a painting for Josiah which be an awesome keepsake and something all the staff in PICU could sign. They have been a huge part of our lives - so wonderful to us and especially to Josiah. I'm sure when we get home will miss them dearly. After spending just about everyday in the unit around these lovely people they become your friends. I plan to paint some more smaller canvasses as Christmas presents just for them.

The painting was done on a 1.5 x 1 m canvas and drawn by hand, no tracing. This was then painted and finished it off with balls which were all sewn on. I hope when Josiah is older that it will give him a wonderful memory of all those that have helped him though one of the hardest times of his life.

The good news is that Josiah should soon be coming home as funding has been found for a ventilator and a night nurse and the Muscular Dystrophy Association, Queensland will be providing a wheelchair and air pressure mattress. The charity have also assisted in officially setting up Josiah's Appeal, meaning fundraising can begin for the equipment Josiah will need throughout his life, starting with a wheelchair accessible car, so Josiah can attend his hospital appointments and get out and about.

If you would like to donate to Josiah's Appeal contact
Bren Arkinstall, Muscular Dystrophy Queensland, Locked Bag 3000, Eagle Farm BC QLD 4009.

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When two dog lovers decorate a child's nursery it can start to look like a veterinary office. My son, Briar Sebastian Cummins, born October 27, 2003 with X-linked Myotubular Myopathy, would know. My husband and I got carried away. It all started with a dog mural covering an entire wall…a little boy building a dog house, dogs running through the yard and even an angel dog up in the clouds. I found bedding and curtains with bones and puppies, the curtain rods had bone-covered tennis balls on the ends, I added enough stuffed 'doggy animals' to do a 'Where's Waldo' photo and my husband and I even found a mobile with puppies that played 'This Old Man'. With a knick-knack, paddy whack, give a dog a bone…we hoped Briar would love dogs as much as we did!!

Briar came into the world early, floppy, non-responsive, and with no respiratory effort. He was diagnosed with X-linked MTM at around 4 months and was able to come home to his 'puppy haven' after 5 months in the NICU. We had two boxers at home awaiting Briar's arrival. They had been introduced to his smell everyday for 5 long months. Briar came home from the hospital on March 29, 2004 and was greeted with two wagging tails. He would often be visited in his crib and always found such joy in the slobbery kisses of those two dogs. Unfortunately, two boxers were just too big to crawl into the bed with Briar and they are shedders!! Not a characteristic you want to have within close vicinity to a tracheostomy!!

Briar has had many dog toys throughout his 6 years, ones that bark, growl, whimper, etc. He has always loved them and they would always bring a big smile to his face. He has had visits from puppies that have snuggled with him in his bed and licked him up one cheek and down the other. The joy that a puppy brings to Briar is indescribable!! This brought 'Santa' and I to the decision to find our perfect son the perfect best friend. Our little 'Superman' now has an awesome companion and his name is 'Batman'.

We began the search for Batman on the internet looking for non-shedders. We then took the list and studied each breed. We needed a non-shedder that would not outgrow Briar's bed, an intelligent dog with a calm demeanor. We came across a breed that neither of us had heard of, the Mi-ki. Considered to be hypoallergenic, the Mi-kis are also recommended for the differently-abled and are often used as therapy dogs due to their loving nature and snug-ability. We knew we had found the best match for Briar. I began contacting breeders, which were few and far between, to learn more about the Mi-ki. Disappointment set in fast as we realized just how rare this breed was, the breeders were very proud of these puppies and it was shown in the pricing. I chose not to give up, however. Briar is priceless to us and MTM is a rare disorder, so without a doubt, Briar needed a priceless and rare Mi-ki.

I sent photos of Briar and told his story to a breeder who asked the question, 'Why is it you are interested in this breed'? Soon thereafter, I was put in contact with Batman's breeder / owner who was touched by Briar's story and wanted to help, Briar was meant to have this puppy. She told me of this great little pup she had which had the perfect personality for Briar. All of a sudden, this expensive and rare Mi-ki, which we thought was out of our reach, was offered to us with a new heart-touched price. Briar's story set the angels into motion and an early Christmas present was delivered!!

Batman and Briar were introduced on November 9th of this year. Santa came a little early but you can experience the joy of giving and the happiness it brings all year long. The most beautiful smile you can imagine spreads across Briar's face when he looks at his new best friend. Briar loves his puppy and to see his eyes light up when Batman hops up on his bed will make the coldest of hearts melt. It is a wonderful feeling to be able to give Briar a portion of the never-ending joy he has given us. There is a special emotion that comes over you when the light of your child's smile shines bright when they get that perfect gift. There is no better feeling to know that miracles still happen and you can still find the joy of Christmas around you ... even when it is as simple as the connection between a boy and his dog.

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The Muscular Dystrophy Campaign (MDC) have been campaigning hard for NHS Specialised Commissioning Groups in England to undertake reviews of their local neuromuscular services. A review in the South West, has led to over £1 million of new investment in specialist services and in the West Midlands a similar review is underway but this still leaves eight NHS Groups to tackle, so MDC are asking for your support by signing their petition, calling for an urgent review of services in your region to improve specialist care for patients and families. All you need to do is:

The MDC Research Team aims to keep families up to date with the latest research advances by publishing information in Target MD and Target Research and on the MDC website.

The team now want to harness the experience and skills of their supporters in order to ensure that the information they provide is what people are looking for and that it is a language that can be easily understood.

Over the coming year, they would like to build up a list of representatives for most of the conditions that the campaign covers, whom they can contact by email for advice and feedback on how best to communicate particular research areas.

If you think you can assist in research communication, please call Dr Kristina Mills on 020 7803 4813 or email research@muscular-dystrophy.org.

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Rare Disease Day is celebrated internationally on the last day in February each year and in 2010 the Genetic Interest Group (GIG) will be working with Rare Disease UK (RDUK) to help raise the profile of rare diseases and the need for the development of a strategy for integrated service delivery.

The theme for the 2010 Rare Disease Day is rare disease and research - 'Patients and Researchers: Partners for life'. GIG and RDUK will be working together and hoping to gain some media coverage in the run up to the day.

Everyone is welcome to take part in rare disease day. Logos will shortly be made available that can be used on websites and there will also be an opportunity to become a "Friend of Rare Disease Day" on the Rare Disease Day website.

In addition, a variety of media volunteers, including patients, researchers, healthcare professionals and industry will be needed in January as case studies in local newspapers and for radio stations too in order to show how important rare disease research is and publicise the day as far and wide as possible.

If you would like to take part, contact Melissa Hillier at the Genetic Interest Group for more information.

The Genetic Interest Group (GIG) has recently announced a new venture as a result of their Insurance Templates Project which has been led by Ben Francis. As part of Ben's project he met with Fiona Macrae. Fiona has experience as a patient and as an insurer. She was shocked when she tried to get travel insurance following her diagnosis of breast cancer a few years ago. From her experience in the industry she knew that she didn't pose a large risk, however try as she might she wasn't able to get a reasonably priced quote.

Fiona decided to take some positive steps and use her knowledge to set up Insure Pink. Insure Pink developed a new system for calculating risk which enables it be more flexible to the needs of patients with breast cancer wanting travel insurance. Once it became clear that this business model worked, and in discussions with GIG, Fiona started to think about all the other conditions where people may have issues with travel insurance and where this new business model could work.

Fiona is now in the early stages of developing Insurancewith a new travel insurance website for people affected by long term conditions. She is keen to look at each condition individually to ensure that the questions asked are relevant and provide the real information Insurancewith will need in order to provide a reasonable quote.

The idea is still in it's early stages but in order for it to work, Fiona needs consumer champions to help her provide a travel insurance website that can really work. Champions do not need to buy the travel insurance but if you could share your knowledge of your condition, Fiona can try to set up a fair system for travel insurance for those with genetic conditions.

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Leonard Cheshire Disability supports over 21,000 disabled people in the UK and works in 52 countries, campaigning for change providing innovative services that give disabled people the opportunity to live life their way.

With the New Year in sight, Leonard Cheshire Disability are developing their campaign plans for 2010 and want to hear more about you and the issues that are important to you.

Leonard Cheshire want 2010 to be their most active year yet and want to make sure they are campaigning on the issues that matter to you, so have created a survey to give you the opportunity to tell them what matters to you. views and ideas to help shape our campaigns for the next year. With your help they can influence decision makers and change attitudes towards disability.

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The campaign seeks to amplify fathers' voices and improve public attitudes towards dads by creating public debate about the role of fathers.

Organisations can sign up to be a Think Fathers Champion. Being a Champion is open to any organisation - service providers, local authorities, employers, agencies - it simply means you are making a commitment to support father-child relationships in your work. As a Champion you will receive regular updates and support from the Fatherhood Institute.

The charity Contact a Family (CAF) has recently produced a new information booklet entitled 'Fathers'. A number of fathers from various CAF workshops have helped to produce the guide which has helpful hints and tips and also stories from fathers.

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New Blue Badge Facilities Online

Directgov's online map of parking facilities for Blue Badge holders now includes a rail map feature, with accessibility information for more than 2,000 train stations. This will enable people who have a Blue Badge to plan journeys in the UK more easily and book direct assistance in advance.

The map has also been expanded to feature accessibility information for more than 160 major football stadiums. This should help Blue Badge holders, their friends and family have a better experience at the game, whether home or away.

The mapping service has been developed by Directgov's Disabled People and Caring for Someone franchise, part of the Office for Disability's Communications Team.

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The 'What Do You Believe In' campaign was launched on 3 December 2009 to encourage people to give to causes they care about. The aim of the campaign is to get people thinking about the issues and causes they care about, then challenging them to act on this by asking 'what are you going to do about it?'

Spearheaded by the National Council for Voluntary Organisations (NCVO), the campaign encourages people to actively support organisations striving to make a difference to their local community or wider society. The campaign has the backing of the Prime Minister and his wife Sarah Brown, the actress Kate Winslet, as well as other sector support organisations and a string of frontline charities including The Big Give website, Institute of Fundraising, Charity Commission, Charities Aid Foundation (CAF), the National Association for Voluntary and Community Action (NAVCA) and the Fundraising Standards Board.

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Assumptions is a video produced by Anne Harland, created as an awareness / advocacy piece as part of a digital story telling photography course for women with disabilities and differences.

Anne says 'The physical challenges faced by those with a disability are many but they can usually be overcome. It is the attitudinal barriers that are difficult to deal with. It is the attitudinal barriers that ultimately isolate and break the spirit'.

'The thoughts and stories I have shared are not things I usually talk about. This is a very personal piece but my reasons for completing the work are not personal. My intension is to 'shed some light' and 'create awareness' of the damaging consequences that can result when people make assumptions especially as they relate to individuals with a disability. I hope my story will encourage reflection and dialogue.'

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There is still time to send christmas greetings to even the most distant relatives this year with some great e-cards from the Myotubular Trust, Muscular Dystrophy Campaign and Jeans for Genes.

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Remember! Don't throw away your toner cartridges and mobile phones.

Every year more than two million printer cartridges and 15 million mobile phones are disposed of in landfill sites in the UK.

You can stop this waste by joining a recycling programme and in turn raise money to help people with neuromuscular disorders.

• One cartridge can be worth up to £6 and could help provide vital information to a newly diagnosed family

• Eight toners could help provide a much needed physiotherapy session for a child with muscular dystrophy

• 20 toners could fund two hours of research - vitals hours to help scientists in their quest to find treatments and cures.

Organisations taking part in recycling initiatives are the Myotubular Trust and the Muscular Dystrophy Campaign.

To learn more, either register as a supporter of the Myotubular Trust at Office Green or contact i.robinson@muscular-dystrophy.org on 020 7803 4800.

Used postage stamps from are also valuable and should be sent to the Muscular Dystrophy Campaign,

61 Southwark Street, London SE1 0HL

~ Visit the Information Point for Centronuclear and Myotubular Myopathy ~

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