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Welcome to the summer issue of the Information Point newsletter. There is much to report this issue - The Myotubular Trust is going from strength to strength; the charity has now raised the amazing sum of £430,000 (Euro 550,837) for new research and this issue, we have news of several large MTT fundraising events that have taken place over the summer. In the US plans are underway for a 3 day family conference for the summer of 2009 and the Foye Myopathy Project (formerly the Hope to Cure Campaign) have recently announced that clinical genetic testing for DNM2 is now available at the University of Chicago. The Information Point is now on Facebook; it is planned to use the pages to report on things that happen in between newsletters and will also allow group members to chat and share news, photos, videos and events. Members can also show their support of the Information Point by adding us as a Cause on their Facebook profile page, so helping raise awareness of Centronuclear and Myotubular Myopathy, among many who may never have heard of the condition. Our webshop is continuing to do steady business and has now raised £516.94. If you are an online shopper please consider doing your shopping with us and if not, why not give it a go. We receive generous commission on many different types of purchases including clothes, books, cds and financial services products and all funds raised are donated to the Myotubular Trust (UK) and the Beggs Laboratory (USA). Our webshop providers often run competitions for shoppers - currently Marks and Spencer are offering one lucky webshop customer the chance to win £250 to spend at Marks and Spencer, so why not pop by and take a look at everything on offer. Other news is that the Information Point will soon be able to link directly to full medical reports on the website, rather than linking to websites with an abstract copy. Previously, there has been a charge for these reports but within the next year, any publication that was partially funded by the US NIH will be available free of charge from PubMedCentral. On a personal note, I am now two months away from completing my degree and looking forward to life without word counts and deadlines. Thank you to everyone who responded to my request for information and feedback about my design project in the last issue - your help has been invaluable. As always, if you have any stories or information to share over the coming months, please get in touch. It is hoped to include a feature in the next issue about CNM / MTM family get togethers, so if your family has met up with another family, please send a photograph together with details of your meeting, so this can be included next time around.
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The Myotubular Trust is going from strength to strength; the charity has now raised the amazing sum of £430,000 (Euro 550,837). When the charity was launched, initially the goal was to raise enough funds to pay for both small, incremental pieces of research and larger projects should they present themselves. However, the success in raising funds, now means the charity is in the gratifying position of looking at a very varied type of research application and being able to fund the best opportunities that are presented. It is hoped that the first research grants will be made before the end of this year by which time it is hoped that the research fund will have reached £500,000. The Trust have now finalised their Scientific Board and put out an advance notice within the medical research community of a first call for research projects. The Board will allocate funds on behalf of the Trust to the research proposals that they deem have the greatest possibility of leading to a cure or treatment. The Trust hope to be in a position to accept new grant funding applications by the early autumn and all the details of the application process will appear on the Trust website when they are finalised.
Professor Francesco Muntoni, who is a renowned and highly respected scientist in the field of paediatric neuromuscular disease, Professor of Paediatric Neurology at Imperial College and Head of the Dubowitz Neuromuscular Centre, now based at the Institute of Child Health in Great Ormond Street has agreed to be the Chair of the Scientific Board - and the value of his involvement cannot be underestimated.
The other members of the Scientific Board are each eminent scientists in their field and cover the range of disciplines anticipated to be critical in finding a treatment or cure.
The Scientific Board will be responsible for assessing all the applications for research that are received. They will put applications out for peer review and in front of the parent / patient advocates and Trustees to agree the final allocation of funds. If you wish to know more about the Scientific Board, the peer review process and how it's all developing, The Trust have now updated their research pages to give everyone an understanding of how research into Myotubular Myopathy has developed over the years. Dr Meriel McEntagert of St George's Hospital, London, has written an overview of the condition, and provided links to some of the original research papers, as well as some recent publications, including a paper from France. The 'Mornings Questions Paper' from the 2007 Family Conference, has also been updated with some questions to and answers from the researcher involved in this new work, Dr Anna Buj-Bello.
The Trust were delighted to receive funding of a minimum of £25,000 from the UK charity Jeans for Genes earlier this year, which will be used to develop a Patient Registry. Rare diseases pose special research challenges; the small number of affected patients often results in limited clinical experience within individual centres. Therefore the clinical description of rare diseases may be incomplete or skewed. Furthermore, randomised controlled trials with adequate sample size and length of follow up to assessment treatment outcomes, may be extremely difficult or not feasible. The Myotubular Trust Patient Registry will be a longitudinal disease registry which it is believed is the best and only feasible way to comprehensively increase knowledge about the clinical characteristics and natural history of Myotubular / Centronuclear Myopathy and assess the long-term outcomes of treatment. It will provide a database for clinicians, health professionals and researchers to help accelerate the development and delivery of new treatments. It will not only encourage development of more research but provide neuromuscular researchers with specific information to assist their research. The database will also help publicise new clinical trials and information about best practice for managing the condition, as it becomes available. The registry has the full backing of the researchers in the field of European neuromuscular disease; Dr Heinz Jungbluth, Senior Lecturer and Consultant Paediatric Neurologist at the Evelina Children's Hospital, Guy's and St Thomas' NHS Foundation Trust is currently writing the database, while liaising with his scientific peers globally to ensure its robustness. The database will soon be created in partnership with TREAT NMD (Translational Research in Europe - Assessment and Treatment of Neuromuscular Diseases). Read more about what you can do to support the Myotubular Trust on Jeans for Genes Day Friends of the Myotubular Trust The Myotubular Trust now has a number of high profile supporters who have taken time out of their busy schedules to help raise funds and boost the profile of the condition. You can read about them individually and see how they are personally linked to affected individuals and families, at the Myotubular Trust website. Over the past two years, the Myotubular Trust have received some incredible financial support and pro bono help, from corporate organisations of all types and sizes. Supporting charitable organisations provides huge tax benefits to businesses. Many companies have a formal employee nomination and selections process, to decide which charity will benefit from a percentage of their profits each year and some are prepared to Charity Match any funds raised or select a charity of the year. Often a simple letter from an employee who has a close connection with Myotubular Trust, has really helped to influence a decision to sponsor them. It is much more meaningful to corporate organisations to support a charity, which is connected in some way to an employee. In fact a number of corporates who had already fully allocated their annual charity spend, have made substantial donations to the Trust entirely based on their link to an individual affected family. If you, or someone you know, is willing to approach your employers to nominate the Myotubular Trust, the charity can help support you, by providing a tailored grant funding document, charity DVD, personal letter, PowerPoint presentation, or anything else to support the application. This summer has seen a number of big fundraising events for the Myotubular Trust; the London 10k and the Thames Walk, both of which attracted over 70 supporters, also the Mongolian Rally (see feature later in this issue). 20 Mile Thames Walk - Saturday 10th May 2008 This London based event, in memory of Tom Lennox, attracted over 70 walkers and raised an incredible £28,000. It is hoped that this will become an annual flagship event, as it appeals to those people who wouldn't dream of doing a 10K run. Next years event will take place on Saturday 9th May 2009, so put the date in your diary. London 10K, Sunday 6th July 2008 This event is the fundraising event of the Myotubular Trust calendar, it is a great event in which to participate and it brings so many supporters together in one go - it is a magical day, as well as being the Trust's very best source of income.
This year the rainy weather did little to dampen the enthusiasm of runners and supporters who gathered in St James's Park for a 'photo opportunity' before and the race. The runners, who all wore their Myotubular Trust t-shirts, received a few cooling showers en route, but they were buoyed by the enthusiastic cries of supporters who positioned themselves at various points along the route with pink balloons.
Next year's race will take place on Sunday 12th July 2009, so put the date in your diary and start training. You can book yourself online directly at the London 10k website but please email the Myotubular Trust if you do this, as the organisers do not ask which charity you intend to run for. There have been many other events also and the huge contribution these events make to the charity cumulatively cannot be overstated. These events have included, marathons, half marathons, swims, head shaves, car washes, parties, car boot sales, bike rides and even diving with sharks. The charity have been astounded by the number of people who have been inspired by events they've attended, heard about, or seen on the website and say that fundraising projects create a ripple effect - one small idea leads to another, which often leads to random donations, or more fundraising from friends of friends who have no direct personal link. It's very powerful and is incredibly effective in raising funds. However, the Trust still need to keep up the pace of fundraising for the foreseeable future and still need the support of affected families and indeed, the charity and its continued success relies on a strong partnership of affected individuals and families. They are not nursing a never ending hope for a 'miracle' - the project has an end in sight. As Professor Muntoni says 'A combination of funding and research has caused an explosion of increased knowledge and now we are looking at a tangible distance to a cure or treatment, rather than possible infinity'. _______________________________________________________________________________________ Back to Top
The Huangs, out of their compassion, were called to action to help make a difference and in September they will hosting a fundraiser, to support CNM research at Children's Hospital Boston aboard the Odyssey at Navy Pier Chicago. Net profits from this event will be donated to the Foye Myopathy Fund.
The event will include complimentary champagne and mimosas, an extensive brunch menu, spectacular views of the Chicago skyline, a Jazz trio, silent auction and raffle and children's entertainment.
Clinical Testing for DNM2 Over the last couple of issues, we have reported that Sarah and Patrick Foye, in collaboration with the University of Chicago Genetic Services laboratories and Dr Beggs Congenital Myopathy Research Program at Children's Hospital Boston, had sponsored an application for a CETT grant to develop a clinical test for DNM2, the gene discovered to be related to Autosomal Dominant Centronuclear Myopathy and are now happy to report that clinical testing for DNM2, is available at the University of Chicago. For further information about genetic testing worldwide, please see the genetic testing pages on our website. DNM2 associated CNM is Autosomal Dominant; people with this condition have one normal copy of the DNM2 gene and one copy with a change that causes the protein not to work properly. Thus, people with DNM2 associated CNM have a 50% (1 in 2) chance of passing it down to each child. Patients with CNM caused by a change (mutation) in the DNM2 gene usually have muscle weakness in childhood or adulthood, although some may have problems earlier. The DNM2 gene is located on chromosome 19. Everyone has two copies of the DNM2 gene. If a person has a change in one copy of the DNM2 gene, he or she will not be able to make as much normal protein and will have CNM. Who should be tested? Clinical testing for DNM2 may confirm that you or your child has CNM or that CNM runs in your family and your chance of having a child with CNM. The first person to be tested should be the person with CNM. Testing for mutations in DNM2 is complex. It is like reading a book and looking for spelling mistakes. You may read the whole book and miss the 'typos', however when you do find them, then it is easy to test other family members (i.e. you know that the change is on page 200 in the second paragraph). When changes in DNM2 are found in the person with CNM, testing other family members, even during a pregnancy, is easy and fast. Reasons for genetic testing for CNM
Genetic testing is very complicated and a very personal decision, please consider meeting with a genetic counselor to make the best decision for your family. What does it mean if they find one mutation? Finding only one change in the DNM2 gene in a patient with possible CNM confirms the diagnosis of CNM. What does it mean if they don't find a mutation? If someone does not have any changes in the DNM2 gene, then his / her CNM is most likely not caused by problems in the gene that was tested. There are probably changes in other genes that cause CNM that are not yet known, so negative DNM2 testing does not rule out a diagnosis of CNM. The test may also find something that cannot be understood. It may then be necessary to test the individual's parents to learn more. What does it mean for my child if they find a variant of unknown significance? A small number of patients will have a change in the DNM2 gene, but it is not certain whether that change causes CNM or not. In this case, it is recommended that parents are tested to give more information. How do I get myself or my child tested? If you think that you or your child has CNM, your doctor or hospital can arrange for you to see a genetic or neuromuscular specialist who may help you order the test for you or your child. A blood sample is required for testing. Any questions about ordering a testing, should be referred to a physician or genetic counselor, who will contact The University of Chicago Genetics Services Laboratory. How much does the testing cost? At the University of Chicago, the cost for each test is $2,025. Will my child's health insurance cover the cost? Please view the University of Chicago's document Genetic Testing for Centronuclear and Myotubular Myopathy for further guidance including CPT (Current Procedural Terminology) codes. When / how will I get the results? Testing takes approximately 4 - 6 weeks. Results will be faxed and mailed to your doctor. What happens to the information from this test? Your doctor will send a form about you / your child's symptoms with the blood sample. This will help the lab understand the test result. The symptoms and test results will be put into a public database after removing the name and all personal information. Information from people with CNM will increase what we know about these disorders and the genetic test. _______________________________________________________________________________________ Back to Top On 18th May 2008 Rachel Abram took part in the Chester Half Marathon to raise funds for the Myotubular Trust. Rachel had never taken part in an event of this type before but completed the course in 1 hour 57 minutes, coming 1071st out of 1841 - below Rachel writes about the day.
I spent the next two hours watching people overtake me, then later I would pass them only to be overtaken again. But no matter my aim was to raise money and awareness not to win! So I ran on at my own pace, counting off the mile markers, taking on water at the stops kindly provided and smiling at the folks who had gathered to watch and cheer everyone on. All was going well until I got over excited about being only 3 miles from the finish and got a stitch, but I dug deep and kept going (even if was very slowly for a while) and managed a sprint finish in order to achieve my target time of under 2 hours. The culmination of months of training has been very successful with Rachel raising over £800 for the Myotubular Trust and an increased awareness of the condition. Good work Rachel!
Information about the event and route map | Media coverage of the event _______________________________________________________________________________________ Back to Top In July this year, Rob Green and Jon Taylor took part in the Mongol Rally, an annual race that attracts around 200 cars and motorbikes, to help raise funds for Myotubular Myopathy and Mercy Corps Mongolia. The 10,000 mile adventure took in 18 countries, 6 mountain ranges and 2 continents.
Rob and Jon first came into contact with The Myotubular Trust through a friend who is parent of a boy with X-Linked Myotubular Myopathy and hope to raise £2,000 for the charity. The guys are no novices to overseas rallies to help raise funds for the charity. They have helped the Trust, for the past 2 years by driving in the Staples 2 Naples and Czech Wrecks rallies, but this year they embarked on their biggest challenge to date by driving 10,000 miles to Mongolia in a 1.0 litre 1992 VW Polo hatchback.
The Mongol Rally is an annual race from the Czech Republic to Mongolia, consisting of around 200 cars and motorbikes. The rules are simple - the engine size is a maximum of 1 litre or 125cc for a bike and that's it, there are no other rules or support. In preparation for their on and off roading experience, Rob and Jon re-routed the fuel lines through the inside of the vehicle and made deflector shields to cover the break pipes and exhaust sections. This was to stop any rocks or other debris damaging them when in areas that have no tarmac.
Jon and Rob set off from the race start point at London's Hyde Park on 19th July and their first stop was Maastricht, Netherlands before heading off to Plzen in the Czech Republic, where there was a large party with all the teams from Spain, Italy and other European countries, before the official start the next morning.
Once in the capital they arranged to give their car to a local school to use as transport or funds. The rest of their equipment was given to some of the large numbers of homeless and needy people in and around the city. View more photographs at Photobucket _______________________________________________________________________________________ Back to Top
Markus lives in Norway and has X-linked Myotubular Myopathy. This year he will take his first class at Hellemyr school; he will be one of 15 children who attend the school in a wheelchair. Students at the school recently submitted an application to fund a new playground which will enable all the students to play together. A teacher says 'It is amazing that the students are so resourceful and apply for money for something that first and foremost is for the benefit of others'.
You can help the students at Hellemyr school get their playground by voting at the LOS website. Select the school by clicking on the radio button to the left of its description, as shown in the image below. Then scroll to the bottom of the screen and click on the word 'stem' on the right hand side of the screen to vote.
Voting closes on 5 September and the winner will be announced on 7 September. _______________________________________________________________________________________ Back to Top
Jeans for Genes Day this year will take place on Friday 3rd October and this year will help support the work of the Myotubular Trust and the Muscular Dystrophy Campaign - two of 18 charities chosen this year to receive funds. Jeans for Genes is changing the world for children with genetic disorders. This year it's all about raising money 'Through the Generations', so the Jeans for Genes team have come up with loads of fundraising ideas inspired by how our parents and grandparents wore their jeans. The charity have also launched a special awards programme to celebrate school children all over the UK, so if your class has done a brilliant job fundraising, nominate them for a gold or silver prize and if your class wins, your school may receive a visit from a celebrity supporter to present the award. To get involved, visit the Jeans for Genes website, which tells you everything you need to know Nursery Schools | Primary Schools | Secondary Schools | Workplaces However you decide to do to raise money, have fun and don't forget to send us your photos and stories for inclusion in our next newsletter. _______________________________________________________________________________________ Back to Top Muscle Week will take place from 20 - 27 September 2008. The event aims to raise the profile of muscle disease and will be used to campaign for equal services for all those with muscle disease, as well as highlighting the ongoing need for research. The Muscular Dystrophy Campaign National Conference will take place this year on Saturday 27 September at the Hilton Metropole Hotel, Birmingham. The programme includes news on research and care, support updates and campaign details. Please book your place in advance by calling 020 7803 4800 or by email. The Scottish Conference will take place on 25 October at the Beardmore Hotel, Clydebank and will include the Scottish Council AGM. Please contact Margaret Tooth on 01324 810958. Building on Foundations Campaign: Establishing a Specialist Neuromuscular Service across England Patients with neuromuscular diseases are faced with a fragmented, sub-standard system of care, with significant variations in survival across the UK, according to new evidence gathered by the Muscular Dystrophy Campaign. In December 2007, a group of leading clinicians, patients and the charity, presented to Parliament a report illustrating vast disparities in service provision for people with a neuromuscular disease. Key findings from the report, included:
Philip Butcher, Chief Executive of the Muscular Dystrophy Campaign, said 'This damning report illustrates the challenges facing Government, the NHS and Commissioners. People with rare illnesses are living longer thanks to medical advances, and yet local NHS services are failing to meet this demand. It is essential that the Department of Health and the NHS recognise the specialist nature of the care needed by patients with neuromuscular diseases and ensure that such services are available to all patients, regardless of where they live'. The Muscular Dystrophy Campaign, clinicians and patients will be calling on the Government and the NHS to: 1. Recognise that current service provision for neuromuscular diseases is failing many patients and acknowledge that all patients with neuromuscular diseases require access to specialist diagnosis, treatment and on-going care. 2. Pay particular attention to those regions highlighted in this report where patient survival is reduced and services are failing. 3. Recognise that services should be delivered through specialised neuromuscular regional centres which also give support and clinical leadership to a network of local clinics. 4. Ensure that these neuromuscular centres and clinics have specialised multi-disciplinary teams to provide all patients with a comprehensive level of care. 5. Designate specialised neuromuscular services within the Department of Health's Specialised Services Definition Set so that Specialised Commissioning Groups (SCGs) strategically plan for these services across England. 6. Press SCGs to ensure that specialised neuromuscular services are firmly embedded in their region of England in order to overcome current fragmentation, weakness and vulnerability. Read the full report at the Muscular Dystrophy Campaign website.
Trailblazers - The Young Campaigners Network If you are aged between 16 and 30 and want to make a difference to the lives of people living with neuromuscular conditions, get involved in our new young campaigners network, Trailblazers. The network will help to build teams of young people across England who will have the opportunity to learn and use new and varied skills, such as website management, design, working with the media, lobbying politicians, audio and video production, team building and management, running an event in the Houses of Parliament with MPs, Ministers and decision makers. As a Trailblazer campaigner you will have the opportunity to campaign on issues that you feel strongly about in your area. The topics could range from improved support at school and university, to better access to transport and leisure or tourism activities. Whether you want to campaign on access to specialist care services, the timely provision of wheelchairs or the installation of home adaptations, you will have a chance to get your voice heard and make a difference in your community.
Trailblazers campaigners help by:
Trailblazers is completely free and people who are already involved include:
We can only break down barriers and improve the lives of people with neuromuscular conditions by putting pressure on key politicians and policy makers. Therefore the Muscular Dystrophy Campaign need as many people as possible to sign up and get involved in campaigning and help to make a real difference, championing the rights of people with neuromuscular conditions. However much time and energy you spend getting involved and volunteering you will play an essential part in improving the quality of life and independence for young adults with disabilities in your area. Through campaigning and providing information on issues that matter to people with neuromuscular conditions you will make new friends, develop creative and practical skills and have the opportunity for your volunteering work to be accredited by a nationally recognised youth volunteering award. Read more about Trailblazers on the Muscular Dystrophy Campaign website and to find out more or to sign up _______________________________________________________________________________________ Back to Top
Contact a Family is calling on parents to tell their story of raising a disabled child in a national competition which aims to highlight the many issues they face. On the theme of 'Me and my disabled child', Contact a Family is looking for families to make a short video about the joys and challenges of caring for a disabled child. For those families who don't have a video camera, or have other creative impulses, you could share your experience in a written story, make an audio recording or take a photograph. The competition has been launched in the run up to Contact a Family's 30th anniversary and entries are invited from any family member or friend involved in caring for a disabled child since the charity was set up in 1979. Mark Robertson, Contact a Family's Head of Information and New Media, said 'The best clips, pictures and stories will be featured on Contact a Family's website and other online channels such as Youtube, My Space and in our parent magazine, Connected. And throughout our 30th anniversary year we'll be using submitted stories whether they're in words, images or video footage, to raise public awareness of the everyday challenges families face raising a disabled child'. Entries can be a diary account, show a day in the life, or focus on a particular time raising your child, such as around diagnosis. Or entries can highlight a particular challenge - using public transport, coping with behavioural problems, peoples' attitudes, attending endless assessments and meetings. All entries will be considered in a category alongside others using the same medium, with a chance to win a digital camera - and for the overall winner, a laptop. Prizes for the competition have been kindly donated by Hobbs the Printers. Entries must be submitted by 30 November 2008. Video entries should be no longer than three minutes and written stories no longer than 2,000 words. Videos, podcasts, word documents and digital photos can be submitted by e-mail with Competition in the subject header, either as an attachment or a link. All printed stories, photographs, tapes, DVDs can be posted to: Competition, Contact a Family, Freepost Lon8801, London EC1B 1EE. Contact a Family has produced a new podcast on the subject of Disability Living Allowance. Disability Living Allowance is the main benefit for children and adults with extra care or mobility needs. The podcast explains the two main parts of the benefit, how you can claim it and has other helpful information around getting the benefit. You can also subscribe at no cost on iTunes, simply search for Contact a Family and click 'subscribe'. Contact a Family has identified that some families with disabled children could miss out on vital income due to imminent changes in benefit rules. From 27 October 2008 Incapacity Benefit and income support for people with health problems will be replaced by Employment Support Allowance (ESA). Families with a disabled teenager born before 27th October 1992 have a choice, they can either claim the existing benefits now or wait and claim ESA at a later date. However, some will be worse off on the new ESA depending on individual circumstances. Sarah Rush, Head of Advice at Contact a Family, said 'We know that families with disabled children face enormous financial challenges with more than half living in poverty. It is therefore vitally important that families get advice now, to find out how these benefits changes will affect them'. Contact a Family working with HM Revenue and Customs (HMRC), has also identified there are 28,000 families in the UK who are missing out on much needed extra income through additional tax credits. Families who have not informed HMRC that they receive Disability Living Allowance could be missing out on this additional income, which is paid in addition to existing tax credits they may already receive. If you feel you might be affected by either of these issues or simply want to check that you are getting all the money you are entitled to, telephone the Contact a Family helpline on 0808 808 3555. _______________________________________________________________________________________ Back to Top You Can't Help Who You Fall in Love WithLeonard Cheshire Disability has unveiled six brand new Creature Discomforts with their 'You Can't Help Who You Fall in Love With' campaign. Disabled people have the same desires and aspirations as non-disabled people, in work, education and relationships - the new animations set out to challenge people's low expectations about what disabled people can do.
The new characters are based on the unscripted voices of young disabled people talking about the issues that affect their lives. One animation challenges public perceptions of disabled people, relationships and sex. It opens with a mouse with a physical impairment saying 'Some people think because you have a disability you should be with someone with a disability. It doesn't always work like that'. An elephant steps into the frame and kisses the mouse on the head as she says 'You can’t help who you fall in love with'. The animation cuts to a field full of baby rabbits, with a female rabbit in a wheelchair saying 'Well, they think that if you're disabled you can't have a love life. That's not true though. I can have sex!' [she giggles] Leonard Cheshire Disability's new report on perceptions of disability and relationships, Up Close and Personal, challenges long-held assumptions that disabled people don't - or can't- have a relationship.
Key findings include: Disabled people have exactly the same hopes and anxieties about relationships as non-disabled people.
The Aardman team has created another four characters for the charity's campaign including a blind chameleon, an owl and a shrimp in wheelchairs and a hearing impaired Cheshire cat. Bryan Dutton, Leonard Cheshire Disability's Director General said 'Disabled people experience unnecessary social barriers which are created largely through ignorance. The public's low expectations, especially of their ability to have relationships, play a big part in this. 'We want people to change the way they see disability, to think and act differently and to engage with disabled people in all aspects of life'. Watch the adverts | Send an e-card _______________________________________________________________________________________ Back to Top
Julia Thomas is an artist with a research background in bioscience. After returning to college to further her studies in Art and Design, she now wants to combine the skills and knowledge of both her scientific and artistic backgrounds. In particular, her mission is to work with health related issues and health / science organisations, to inspire artwork that will help to raise awareness for those affected.
At the moment, the project is in the early stages - finding out what is important to those with genetic conditions with respect to raising awareness. The project will collect stories and opinions from people with genetic disorders, family members, friends and freely available material such as from 'Telling Stories'. All this information will form the basis of an artistic response to issues of living with a genetic condition such as care, support, public awareness and current research. Julia is looking for people who are interested in getting involved by talking to her about living with their condition, completing a short survey or getting involved in an art workshop to express aspects of their condition creatively. The aim is to develop and exhibit a series of art installations / sculptures inspired by those affected and hold an exhibition early next year. To get involved or for more information about the project, please email Julia or telephone her on 07711 269101. _______________________________________________________________________________________ Back to Top
Netmums Parent Supporters is a new service offering help to mums through the Netmums Coffee House. The Coffee House forum already provides a well established community of parents, who actively support one another but now experts are also available to offer practical and emotional support, allowing visitors to contact a health visitor online as well as professionals from organisations such as Women's Aid and Contact a Family. Netmums operates nationally but to get the best out of the service, you should search for your local website site and register for free, from where you can access information on child-friendly cafes, childminders and places to go and talk with local mums, read other mums local recommendations and check out information on pre-schools or schools in your area. Visit the Netmums website. _______________________________________________________________________________________ Back to Top Congratulations to Adam Foye from New Jersey, USA, who has Recessive Centronuclear Myopathy and earlier this year finished his school baseball programme. Adam received a trophy with which he is very pleased and was very excited when his team played the parents and he 'dove' into 1st base!
Adam is pictured above playing Baseball and with his Baseball Trophy. Well done Adam! _______________________________________________________________________________________ Back to Top 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. To learn more, contact the Muscular Dystrophy Campaign Email: i.robinson@muscular-dystrophy.org or Telephone: 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 ~ |
Hellemyr School Playground
