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Welcome to the latest issue of the Information Point newsletter and the final issue of 2007. A lot has happened this year; the Information Point became a member of the National Council for Voluntary Organisations which provides information, advice and support to those working in the voluntary sector. The website also received two wonderful awards - a Community Champions Fund grant and a BeCause Award from UnLtd. It has been lovely to be recognised in this way. In November the Information Point was re-vamped - it should now be easier for users to navigate, as it has been designed in such a way, that it should view on any computer, without the need to scroll from left to right. We recently heard that Net-Work, the organisation who provide our web hosting and domain name, will be continuing to sponsor the website for a further 2 years and the website has also been used as a case study for Voluntary Action Westminster, an independent charity that works with community and voluntary groups. The study will appear in their publication 'A Critical Guide to User Involvement' in early 2008. In September the Myotubular Trust hosted the first ever European Family Conference Day which was attended by families and clinicians from across Europe, this was followed in November by a charity auction which raised over £100,000. The Trust are now putting plans in place for their Patient Registry and this Christmas will be selling cards online through Studio 51 to help raise funds - 51 pence in every £1.00 (excluding postage and packing) will go directly to the Trust. In the US, plans are underway for their first ever Family Conference Day to take place in 2009 and the Hope to Cure Campaign, run by Pat and Sarah Foye, is continuing its fundraising activities. In addition, Pat and Sarah in collaboration with the University of Chicago Genetic Services laboratories and Dr Beggs Congenital Myopathy Research Program, have recently 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. I hope you will enjoy reading this latest issue of the newsletter and I would like to thank everyone who has contributed to this - the newsletter would be nothing without you. If you are involved in any projects, meetings or get togethers over the coming months, please do let me know about them, so they can be included in the next issue. Also, if you have any thoughts about this newsletter or the website, please share them with me - I try to take all comments on board and use them to shape the work of the Information Point. Wishing everyone a safe, happy and peaceful holiday season.
_______________________________________________________________________________________ Back to Top Earlier this year the Information Point was shortlised and subsequently won the first ever BeCause Award. The BeCause awards are operated by UnLtd and Bebo, the social networking website. Each month judges from UnLtd and Bebo select a number of projects that they believe have the potential to make a positive impact on society. The whole Bebo community is then be asked to vote for the best project and the project which receives the most votes is awarded £1,000, as well as receiving ongoing support and advice from UnLtd, in order to maximise the potential of the project. The Information Point is very grateful to the BeCause Awards for taking an interest in and supporting our work, also to Sophie Hughes, who rallied all her friends on Bebo to vote for the Information Point. Sophie's work was immeasurable and we are very grateful to her for her kindness and help. _______________________________________________________________________________________ Back to Top
Webshop News The Information Point webshop has now raised £364.23 but with your help we can raise even more. This Christmas, why not take the hassle out of Christmas shopping by browsing over 5 million products and as an extra incentive the Information Point for Centronuclear and Myotubular Myopathy could win £1000. If our web shop has more purchases than any other buy.at webshop this Christmas we will win £1,000. If we come second place we will win £450 and for third place £200. Here are some of the current offers available at our webshop:
In order for the Information Point to receive commission, all purchases must start at our webshop and it is necessary for users to enable cookies on their computer within their Internet Options. Look for the privacy tab and enter the Information Point webshop website address. All funds raised will be donated to the Myotubular Trust (UK) and the Beggs Laboratory (USA). _______________________________________________________________________________________ Back to Top
On Friday 2nd November the Myotubular Trust held a black tie charity auction and dinner at the newly refurbished Mall Galleries, Pall Mall, London. The event raised over £100,000 all of which will go directly into research to find a cure for Myotubular Myopathy. It was a lovely night, supported by many kind and generous people - food by Passion Organic, music by members of the Royal Opera House Orchestra and the opera singer Friederike Krum, accompanied by Francoise Ogier on the piano. Mark Damazer, Controller of Radio 4 and Suzanna Reid, the BBC newsreader, hosted the evening. The auction was carried out by Freya Mitton of Sothebys and Professor Francesco Muntoni, Myotubular Trust Scientific Advisor and Professor of Paediatric Neurology, Imperial College, London spoke on the necessity of research funding for rare diseases.
Anne Lennox is a founding Trustee of the Myotubular Trust and one of the organisers of the charity auction. Anne said 'all the fantastic prizes and the help we were given from professionals such as Mark Damazer, Susanna Reid, and Friederike Krum the opera singer were all given from the heart - people genuinely wanted to help with such passion that you could feel it in the air'.
Further information about this event can be found at the Myotubular Trust website. _______________________________________________________________________________________ Back to Top
Sarah and Patrick Foye (CNM patient advocates), in collaboration with the University of Chicago Genetic Services laboratories and Dr Beggs Congenital Myopathy Research Program at Children's Hospital Boston, have sponsored an application for the CETT grant to develop a clinical test for DNM2, the gene discovered to be related to Autosomal Dominant Centronuclear Myopathy. The Information Point asked Sarah Foye about the project. There are a handful of researchers doing research on the Centronuclear Myopathies (CNM) (including Myotubular Myopathy) around the world. Amazing work is being done. In the last few years, several new genes have been associated with CNM. Affected families, as well as the scientists, want to see this research translated into usable information for patients. The US National Institute of Health Office of Rare Diseases is sponsoring a new program called the Collaboration, Education and Test Translation Program (CETT) to get research findings into the hands of the people who can use it. The government website summarises the program as follows: 'Collaboration is the key word in the CETT Program's goal to help facilitate the translation of new tests for rare genetic diseases. The program's goals are to translate as many tests as possible and ensure that the best possible test is offered, whether the specific genetic condition affects 5 people or 50,000'. Researchers are working to discover new genes that associated with a disease. Since research labs are not designed to test and treat individual patients, people who want to be tested for a new gene need to be referred to a clinical laboratory. It takes time and money for clinical laboratories to create new tests. Some of these tests may be performed infrequently because of the low incidence of the disease. For example, the major testing centre for Myotubular Myopathy in the US performed an average of about 10 MTM1 tests per year over the last 10 years. The CETT program provides funding for clinical laboratories to create new tests for genes that have been discovered in the research lab in order to help affected families. This program also encourages continued collaboration between the clinical laboratory, researchers and patient advocates. This insures that research will continue even after the test is moved from the research lab into the clinical setting. Results of the CETT grant application for DNM2 are still pending - for more information contact Sarah Foye. Further information about research and genetic testing is available at the Information Point. _______________________________________________________________________________________ Back to Top
Questionnaires can be completed anonymously and should be returned before 25 January 2008.
If you have trouble with completing the survey and would like to have the survey sent to you by regular mail, if you have any questions / suggestions, or would like to help out with the conference, please email Connie Guinn with your name and address. Family Conference (USA) Questionnaire. _______________________________________________________________________________________ Back to Top
The Joshua Frase Foundation has had an unquestionable impact in the world of congenital myopathies. For the past 11 years this American foundation has dedicated themselves to funding innovative research and supporting families affected by these deadly disorders. Founded by Paul and Alison Frase, in honour of their son Joshua who has X-Linked Myotubular Myopathy, this foundation is run with pure hearts and motivated minds. I have had the recent honour of working with Alison Frase compiling a Memorial Database for the Foundation. It is Alison's hope to recognise and celebrate the children who have lived with these diseases and gone on before us. I felt compelled to volunteer my help on this project as this past summer I lost my precious son Samuel who had X-Linked Myotubular Myopathy.
If you would like to add a name to the Joshua Frase Foundation database please email Kim directly. Names can also be added to The Information Point's 'In Memory Page'.
_______________________________________________________________________________________ Back to Top This year has seen an amazing number of events in the CNM / MTM community. Below is a round up of what everyone has been up to.
6 April: USA Family Event at The Boston Harbour Hotel included a short presentation by Dr Patrick Foye on Centronuclear / Myotubular Myopathy and a discussion on current research by Dr Alan Beggs.
14 May: Muscle Interest Group Meeting at the Birmingham Heartlands Hospital Education Centre discussed 'Updates on the Myotubular Myopathies'. 22nd - 24th June: Glastonbury Music Festival hosted the World's Longest Bunting Line displayed in 'The Park' at Glastonbury Music Festival'.
8 July: Sarah Foye hosted a CNM / MTM Family Get Together in New Jersey - other events took place in Ohio, Oregan and Florida.
18 - 19 August: The Hope to Cure Campaign hosted a Softball Tournament in Morris County, New Jersey, USA. 31 August: Mark Fairhurst was sponsored to dive with sharks at the Blue Planet Aquarium, Ellesmere Port to raise money for the Myotubular Trust.
8 September: The Myotubular Trust hosted the first ever European Family Conference Day at the V and A Museum, South Kensington, London and the launch of 'Favourite Places' the first Myotubular Trust charity calendar. 16 September 2007: The Hope to Cure Campaign hosted an Irish Hibernian Dance in Kenilworth, New Jersey, USA.
October - December: IPM - International Poster Management adopted the Myotubular Trust as their charity of the year to help raise awareness of Myotubular Myopathy. A huge backlit billboard poster was been provided on Cromwell Road, London for 2 1/2 months. IPM are also helping with a poster campaign in nurseries across the UK and 100,000 sandwich bags in cafes and bars in London's City and West End, all free of charge.
2 November: The Myotubular Trust Charity Auction and Dinner took place at The Mall Galleries, Pall Mall. 1 December 2007: A Yogathon was held at the Oasis Wellness Center in Montville, New Jersey. Center owner Mayra Sansone, donated the class fees of $500 to CNM research.
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The Muscular Dystrophy Campaign's Clinical Research and Care Committee met on 23rd October and granted four awards to five muscle centres totalling £377,596. Awards have gone to the Oxford Muscle and Nerve Centre, Newcastle Muscle Centre and Oswestry Neuromuscular Unit. The fourth award supports a combined bid from the Dubowitz Muscle Centre, currently at Hammersmith Hospital, and the Institute of Neurology in London.
The Muscular Dystrophy Campaign has been awarded over £250,000 funding by V Inspired, the youth volunteering charity, to encourage young people to be positively involved in their communities. The funding will be put towards a new project that will improve quality of life and boost independence for young adults with disabilities. The project will be a part of the Muscular Dystrophy Campaign's Bridging The Gap Campaign, which aims to improve transition into adulthood for youngsters with muscle disease. The new project will build on this campaign's aim by establishing a network of young adults with disabilities in each of the nine regions of England, who will then become campaigning ambassadors and create a youth information network in key areas such as education, employment and housing. Each regional network will have access to their own website and will be given training in campaigning, press and events. The project, which will involve over 200 young adults for a period of three years, will culminate in the launch of a national Young Disabled Persons All Party Parliamentary Group set up and organised by the network. To read more about this award, visit the Muscular Dystrophy Campaign Website.
The Muscular Dystrophy Campaign is pleased to announce the unveiling of three specially commissioned portraits of three key charity figures. The portraits of HRH Prince Philip Duke of Edinburgh (the charity's patron), Lord Richard Attenborough and Lord John Walton (the charity's two honorary life presidents) will be unveiled on 23 January at the Novas Gallery in London. They have been painted by Jonathan Yeo. His work will feature alongside that of Jacqueline Donachie and Dr Darren Monckton's exhibition, called 'Tomorrow Belongs to Me', which explores the scientific community's refusal to acknowledge the existence of 'anticipation' (the decreasing age of onset of the symptoms from one generation to the next) in disorders such as Myotonic Dystrophy. Also featured is Lesley McIntrye's moving exhibition 'The Time of Her Life'. This documents the short life of Lesley McIntrye's daughter Molly, who died from an unspecified muscle disease at the age of 14. The exhibition is at the Novas Gallery (fully wheelchair accessible), from 23 January until 2 February 2008.
For more information about 'The Time of Her Life', visit the Muscular Dystrophy Campaign website. _______________________________________________________________________________________ Back to Top 
Plans are now underway to create a Patient Registry for Centronuclear / Myotubular Myopathy. The Registry will be a database of very basic patient information which will allow, when the time comes, efficient, fast track, local, clinical trials of new treatments in Europe. The registry will be put together by the Myotubular Trust working in partnership with TREAT-NMD (Translational Research in Europe - Assessment and Treatment of Neuromuscular Diseases), a European neuromuscular network addressing the fragmentation currently hindering translational research for cutting edge therapies in rare neuromuscular diseases (NMD). Article kindly reproduced with permission of Rachel Thompson at TREAT-NMD and Melissa Hillier at the Genetic Interest Group. The TREAT-NMD (Translational Research in Europe for the Assessment and Treatment of Neuromuscular Disease) network currently brings together 21 partner organisations across 11 European countries. Some of Europe's leading clinicians and scientists have formed this 'network of excellence' - the first of its kind - which has been funded by the European Union (FP6). The network also includes patient organisations and industry partners to help establish a common road map for the progression of cutting edge therapies from the lab to the clinic. The overall aim of the network is to integrate European researchers and clinicians in the field of neuromuscular diseases, and to create an infrastructure that lasts beyond the current funding period. This European network is leading the world in terms of an integrated approach for neuromuscular diseases. Neuromuscular disorders affect over 300,000 people in Europe. The term refers to a large group of conditions that affect either the muscles themselves, or the nerves controlling the muscles. Most conditions result in chronic long term disability and early death may eventually result from respiratory or cardiac failure. TREAT-NMD will encourage experts in this field to work together to share good practice and to improve global standards of care. The network will produce treatment guidelines that describe the basic standards of care that all European patients with neuromuscular disorders can expect. At the moment, standards of care vary between different member states, thus making it difficult to conduct multi-centre clinical trials because baseline data is not consistent among these centres. Scientists will work closely with doctors to test and apply new research into these inherited disorders, in order to develop new ways of caring for patients with conditions like Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA). Close links with industry partners will also be further developed in order to advance technological and methodological tools with a view to promote further clinical trials for potential new treatments and cures for rare neuromuscular diseases. Patients and patient charities will be involved at all levels of the project, which will also include a programme of training and education. Impact of the Work
Other areas in which TREAT-NMD will make an impact include:
Other parties are welcome to take part in the network via a broad international club of interest, so that TREAT-NMD will be a resource for the whole community. This group currently contains around 100 researchers, including colleagues from outside Europe, who do not receive funding directly from the EU but who are likely to be part of the network in the future. This will help ensure cooperation between Europe and the rest of the world. TREAT-NMD is currently implementing an international patient registry for the more common neuromuscular diseases that will contain information on both genotype and phenotype, so clinical trials and subsequent treatments can be offered to those patients who are most likely to benefit. For more information about the network please contact the TREAT-NMD Coordinating Office at Further information about the Patient Registry is available at the Information Point. _______________________________________________________________________________________ Back to Top
New Non Invasive Pre-Natal Technologies - How Can Patients Benefit? The Genetic Interest Group (GIG) are holding a workshop on 18th January 2008 at University College Hospital in participation with the SAFE Network, a European funded consortium who are looking at Special Non Invasive Advances in Fetal and Neonatal Evaluation. GIG, as one of the project members, is hosting a series of workshops to discuss how patients and patient organisations can promote and highlight the new non-invasive technology to those who can benefit from it and also how patients can ensure this new technology is transferred as quickly as possible into the NHS Service. The workshop will outline the development of non-invasive technology and also explain in more detail the work that SAFE has been carrying out, there will also be time for participants to discuss the work and how we can move this technology into healthcare practice. For further information, contact the Genetic Interest Group (GIG) website.
Human Genetics Commission Consultative Panel The Human Genetics Commission (HGC) are looking for new people to join their consultative panel. The panel is made up of those directly affected by a genetic condition (either themselves or a family member) and is used by the HGC as a sounding board for its reports and recommendations. It is a great way for patients to influence the agenda of this highly influential Commission.
Visit the Human Genetics Commission website for further information. _______________________________________________________________________________________ Back to Top
Contact a Family have updated the following factsheets, individual copies can be ordered free of charge from their confidential freephone helpline on 0808 808 3555 or downloaded from the Contact Family website:
Contact a Family has been working with Her Majesty's Revenue and Customs (HMRC) to improve the accuracy of tax credit calculations for families whose child or children, get Disability Living Allowance (DLA). Many families do not realise they need to tell HMRC if their child is awarded DLA, but in fact their tax credit calculation can be more generous if they have a disabled child. HMRC are planning to double check that everyone with a disabled child has been awarded the right tax credits, but this will take some time and many families might be missing out in the meantime. The Contact a Family helpline is happy to check your tax credits for you to make sure that you have been awarded the correct amount - give them a call for free on 0808 808 3555.
Contact a Family is urging families to claim Disability Living Allowance. The charity knows from research it has done and from calls received to their helpline, that parents often do not find out about Disability Living Allowances (DLA) for some time after their child is first diagnosed with a disability and that 62% of families with disabled children are not claiming DLA - a potential £109.50 a week on its own and often a trigger for a parent getting Carer's Allowance as well as increased child tax credit payments. It is not possible to accurately work out how many of these children would qualify but Contact a Family are concerned that many may be missing out on DLA simply because they do not know about it and it is believe that when they do find out about it, many are put off by the claim form itself. Contact a Family wants to raise awareness of the benefit as families with disabled children often struggle with higher levels of debt than most, alongside the additional costs they face in raising a disabled child, so want to ensure they know about and claim all the finanicial support that is available. They have also produced a booklet that explains who is eligible for the benefit, which gives step by step instructions to complete the application form and advises on how to appeal against a decision.
Council Tax Benefit is available for people on lower incomes to help with their council tax bills but £2 billion in council tax benefits has been left unclaimed. There are also non means tested discounts and reductions for some carers and disabled people.
Find out if you qualify with the guide to 'Help with council tax bills'.
Some families with disabled children find they spend a lot of time indoors because of their child's mobility problems, while others may have a child whose condition deteriorates in cold weather. Consequently many parents have worries about meeting the costs of fuel bills over the winter. However, there are grants available in the UK for home insulation improvements and ways to help reduce your fuel bills. If you are an owner-occupier or a private tenant you may be able to get a grant towards the costs of making your home more energy efficient - such as improving your home's insulation or its heating system. These improvements can save substantial amounts on heating bills, leaving your household warmer and healthier. As a general rule grants are targeted at households most vulnerable to cold related ill health - the elderly, those with children and the disabled or chronically sick. The criteria differs around the UK. Note: The term 'means tested benefit' means either Income Support, income based Jobseeker's Allowance, Pension Credit, Housing Benefit or Council Tax Benefit. England: Warm Front Scheme, Telephone: 0800 316 2805. Grants of up to £2,700 (£4,000 if oil central heating required) for insulation and heating improvements. To qualify you must:
Wales: Home Energy Efficiency Scheme (HEES), Tel: 0800 316 2815. Provides two types of grant for insulation and heating. You will qualify for a HEES plus grant, of up to £3,600, if:
Alternatively you may qualify for a HEES grant of £2,000 if you have a child under 16, or you are pregnant, and either receive a means tested benefit or get tax credits and have an income of less than £15,460. If you are assessed as needing oil central heating you may be able to access a grant of up to £5,000.
Scotland: Warm Deal Scheme, Telephone: 0800 316 6009. Provides grants of up to £500 to insulate your home. You should qualify if you have a child under 16 who receives DLA, otherwise, you must be receiving tax credits and have an income of under £16,017 or get a means tested benefit or get certain disability benefits. Other forms of help are available for people aged 60 or over.
Northern Ireland: Warm Homes Scheme, Telephone: 0800 181 667. Provides a grant of up to £850 towards energy efficiency and heating measures. You are eligible if:
People who are aged 60 and over and who receive certain benefits can also qualify for a Warm Homes Grant. However they may also be able to access an additional grant too. If you are a local authority tenant and you are concerned about the energy efficiency of your home - approach your local council. If you rent from a housing association approach both your local council and your landlord. _______________________________________________________________________________________ Back to Top
In September, the Every Disabled Child Matters campaign (EDCM launched two reports outlining what parents and disabled children and young people would change if they were the Prime Minister. Over 800 disabled children, young people and their parents contributed to the report, which found most parents wanted not to have to fight for services and disabled children and young people wanted more places to go to be with their friends. The 'If I Could Change One Thing' report was launched at the campaign's Labour party conference fringe event with Rt Hon Ed Balls MP, the Secretary of State for Children, Schools and Families, and Trevor Phillips, Chair of the Commission for Equality and Human Rights. The top three things children and young people wanted to change were:
The top three things parents wanted to change were:
To help make sure that disabled young people have more places to go, EDCM is calling for disabled young people to be fully involved in deciding how the funding from the government's 10 year youth strategy will be spent. Steve Broach, EDCM Campaign Manager, says 'Our 'If I Could Change One Thing' report makes clear that all families of disabled children are asking for, is the right to live ordinary lives. The government has taken positive steps to make disabled children a priority, announcing new funding for short breaks and family support in the 'Aiming High for Disabled Children' review. But more needs to be done to ensure disabled children get the same opportunities as other children. To help achieve this, one of our key recommendations is for every children's centre and extended school to be accessible to disabled children and young people'. To read the reports in full or listen to the young disabled people tell you themselves, visit the EDCM are also challenging Primary Care Trusts to sign up to a new campaign charter, which prioritises health services for disabled children and young people across England. The Charter sets out nine commitments for PCT's to sign up to by January 2009, which include identifying a children's lead with specific responsibility for disabled children. Email your Primary Care Trust and ask them to sign up the PCT charter. _______________________________________________________________________________________ Back to Top
Leonard Cheshire Disability supports over 21,000 disabled people in the UK and works in 52 countries. They campaign for change and provide innovative services that give disabled people the opportunity to live life their way. Recently the charity teamed up with Aardman Animations to create a campaign called Creature Discomforts to challenge and change attitudes towards disability.
The Creature Discomforts awareness campaign is based on the much-loved Creature Comforts series but features the hallmark plasticine characters with disabilities, combined with the real voices and experiences of disabled people. The characters will appear in adverts at bus stops, in newspapers, magazines and online and in January 2008, the animations will be aired on ITV.
The Creature Discomforts campaign aims to highlight the disadvantage and discrimination that disabled people experience every day, largely as a result of the ignorance of the wider population. Recent research indicates that negative attitudes towards disabled people are still at unacceptable levels and create barriers in all aspects of life:
Kevin (pictured right) has Spina Bifida and is the voice of Kevin The Bull Terrier, he says 'No I don't believe a word anyone might say about you can't do that you are in a wheelchair. My standard reply has become ... watch me'. Alex Mihaly is a wheelchair user from Chesterfield and the voice behind Flash the Sausage Dog. He feels strongly about how attitudes towards disability need to change: 'If I could, I would change the way people view disabled people - make them see the whole person, not as someone in a wheelchair or walking about with a stick. I'd just like people to realise that we are real people, we are not brain dead just because we are disabled'. Bryan Dutton, Director General, Leonard Cheshire Disability said: 'We want people to change the way they see disability, to think and act differently and to make a positive difference to the lives of disabled people. Disabled people experience unnecessary social barriers which are created largely through ignorance. In the twenty-first century it is unacceptable that such negative attitudes to disability still persist. Everyone has a part to play in creating a world in which disabled people are included in every aspect of life. 'Creature Comforts is well known and much-loved for its ability to bring home messages in a simple, everyday way. Our Creature Discomforts campaign builds on this, making a serious point with humour'.
To learn more about the campaign visit the Creature Discomforts website. From mid November the characters will appear in adverts at bus stops, in newspapers, magazines and online. In January, the animations will be aired on ITV. Watch the Creature Discomforts adverts. ________________________________________________________________________________________ Back to Top The blue badge scheme has been extended to babies in England and Wales, following similar changes introduced in Scotland. The blue badge is now available to families with children under two, who because of their medical condition, need to travel with bulky medical equipment or be close to a vehicle for emergency medical treatment. People with severe disabilities in both arms, who drive non-adapted vehicles regularly but are unable to operate parking meters, can also apply now. The design of the badge has been amended too, to help prevent the addition of a hologram and so prevent fraud and aid enforcement. The new regulations are available in full on the Office for Public Sector Information website _______________________________________________________________________________________ Back to Top The Neuromuscular Centre Home Working and Home Study Project
The centre offers a choice of accredited qualifications in partnership with a local Further Education college, including the National Open College Network, Clait and City and Guilds. The courses are free and no previous experience or qualification are needed, although you should show an interest and enthusiasm for design. For further information visit the Neuromuscular Centre website.
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Sibs is a UK organisation for people who grow up with a brother or sister with a disability or chronic illness. The aim of the organisation is to enhance the lives of siblings by providing them with information and support, and by influencing service provision for siblings throughout the UK. The long term vision of the organisation is that each local authority in the UK will have a dedicated sibling service, providing sibling groups and one to one support for children who are siblings. Services include:
For further information, visit the Sibs website our website. _______________________________________________________________________________________ Back to Top
Volunteering England, The Trades Union Congress, the National Council for Voluntary Organisations, Community Service Volunteers, and the National Association for Voluntary and Community Action have launched a campaign for a new bank holiday every October to be called Community Day. Community Day would fall during the autumn half term break in October, breaking the long run of 16 weeks without a holiday between August and Christmas. The purpose of the day is to:
To learn more about Community Day and pledge your support, visit the Community Day and Volunteering England websites. _______________________________________________________________________________________ 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. 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 ~ Snowflake graphics courtesy of About.com
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Charity Auction and Dinner
CETT Grant to Develop a Clinical Test for DNM2
This year the Joshua Frase Foundation has begun to compile a Memorial Database. Kim Kowalski volunteered to help with the project and below tells the Information Point about her work.
22 April: Joshua Frase Foundation Teleconference - Lou Sapporrito, Respiratory Therapist spoke on 'The cough assist machine for use in patients with neuromuscular disease'. 
1st July 2007:The Cumpana Fun Run and London 10k were run in memory of Tom Lennox. 
Creature Discomforts
The four animations are based on the genuine voices of disabled people describing in their own words the negative attitudes and barriers they experience, which separate them from society. Each animation ends with the message 'change the way you see disability'.
The Aardman Animations team has created new characters for Leonard Cheshire Disability's campaign, including a bull terrier in a wheelchair, a stick insect with a walking stick and a tortoise on crutches. 
