~ Newsletter ~
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News from the Beggs Laboratory is that over 1,000 individuals with a congenital myopathy and their family members have now enrolled into the Harvard Neuromuscular Disease Project on congenital myopathies. Approximately 75 individuals with Myotubular or Centronuclear Myopathy as well as a number of their family members have enrolled. Given the rarity of Centronuclear and Myotubular Myopathy, these numbers are really good and the more families who enrol, the better the researchers can understand the congenital myopathies. To participate visit the Beggs Laboratory website.
US scientists have found a way to reverse Muscular Dystrophy in mice, offering hope of a cure for humans with muscle-wasting diseases. Although the treatment was not 100% effective, the researchers believe their results provide the proof scientists have been waiting for to demonstrate that it might be possible to reverse muscular dystrophy.
The Information Point webshop has now raised £257.50 which has enabled us to donate money to the Myotubular Trust in the UK and the Beggs Laboratory at Children's Hospital Boston, USA. Latest news from our webshop is that the BT Home Hub is now available which means BT Total Broadband customers get even more for their money. Every subscription to BT Total Broadband will raise £30 commission. M and S is offering free delivery on orders over £30 when using the code PCAHHZT, there is up to 50% off summer clothes at Abound and 6 months free Sky Sports or Movies with any package over £15 - the Information Point gets £50 for every Sky subscription completed via the webshop. Claim 20 free prints and free postage and packaging on your first purchase at Snapfish and save 50% at the Mothercare sale on toys, babywear, maternity and pushchairs while stocks last! 
The Myotubular Trust launched in February of this year is continuing its amazing work and their fund raising total now stands at £35,000 - all this in just 6 months! On top of this the Trust has kicked off its first non-UK fundraising events - a bike ride from Kinsale to Dingle, 100 miles in the beautiful south west of Ireland and a sponsored lunch in Milan, both raising more than E1,000 each. Here is what else has been going on ... London 10K Run
The London 10k Run took place on Sunday 2nd July and was a hugely successful event with everyone involved saying that they will do it again next year. The heat on that day was absolutely excruciating; about 35 deg C so everyone did really well to finish it in some very impressive times! All the runners proudly sported Myotubular Trust t-shirts which were donated by Geneva Health. Next years event will be held on Sunday 1st July 2007 and race packs will be available from the Myotubular Trust website soon. If you want to get involved in something before then, don't forget the London to Windsor Bike Ride on Sunday 3rd September 2006 or you can join in on one of Bike Events UK 's activities which are scheduled to run into the middle of September. Myotubular Trust fundraisers can join in with any of their bike events (subject to spaces). Bike rides are organised for 2006 around Europe (all of which have affiliated charities) but on condition that the Myotubular Trust makes a 5% contribution to the Bike Events' affiliated charity from monies raised, cyclists for the Trust can take part. If you join an event, please advise the Myotubular Trust.
The Gorgonzola Go-Go Guys Here is a forthcoming event - the Gorgonzola Go-Go Guys also known as Rob Green, Jon Taylor, Tom Phillips and Tony Phillips (and a rubber chicken called Colin) will be taking part in the Staples to Naples Banger Rally between 22nd - 25th September 2006. Three charities have been chosen to benefit from the guys efforts one of which is the Myotubular Trust. To find out more about the rally and to see the route visit the Gorgonzola Go-Go Guys website.
Worlds Longest Bunting Line The closing date for pennants for the Myotubular Trust Worlds Longest Bunting Line has now passed and the guestimated length was thought to be at least 1,700 metres (over 600 metres longer than the current record). In July, the bunting was judged by Cheryl Gillan MP and she was so impressed by the whole thing that she prepared an Early Day Motion in the House of Commons. The bunting has been displayed at Chalfont St Peter CE School over the summer and now needs to be taken down and and measured accurately to confirm the length but at the time of going to press things are looking good. Over 100 signed celebrity gold flags were received including Sharon Osbourne, Ronan Keating, Freddie Flintoff, West Ham United team members and Daniel Craig - the new James Bond. These will be sold on ebay soon to raise additional funding for the Trust. Below are photos of some of the individual penanants received by the Information Point and what it all looked like when attached together. Stunning!
Other News
Netherlands Get Together When Jacqueline Schadee's son Ingo was born in the Netherlands in 2004, doctors told her that only one MTM baby was born every two years. However, since January of this year four children with MTM have been born in the Netherlands, a country probably no bigger than the state of New Jersey in the USA and in June, fourteen parents of MTM children got together to talk. This is Jacqueline's account of the day ... We met with fourteen parents of seven boys. We all took about 15 minutes to share the story of our boys with the others. Two boys are still alive (one is 6 and one is 6 months old) the others unfortunately have passed away over the last 1, 5 years. After these often emotional introductions we talked a bit about mutual issues, like genetic testing regarding the future, as many of the parents would love to have another baby but are unsure of the risks. Although a sad occassion it was wonderful to meet up with all the fellow parents. We shared pictures and talked about our experiences. "Did your son have big ears as well (yes, all of them), do you experience any muscle weakness yourself (no), was he born too early or too late, what about the future, etc!." It was wonderful and very supportive for everyone of us to meet parents who had so much in common. After about two hours, our time was finished. We still had lots left to talk about, but it was enough for now. We had a nice lunch and then went to a lecture together (as our meeting was part of a national conference on muscular diseases) and asked the professor lots of questions on MTM, which he could not answer most of the time. After this we had a drink, the atmosphere was not too heavy and we had a laugh as well. Somehow we got along together very well. A future meeting is arranged for October again, in the city of Utrecht and then next Spring it is hoped to invite people from outside of the Netherlands.
The Disability Debate Changing Britain for Good, Putting Disability at the Heart of Public Policy The Disability Rights Commission (DRC) recently launched a campaign to highlight levels of unfair treatment, poverty and exclusion experienced by disabled people and those with long term health conditions. A dedicated website has been set up to enable as many people as possible to take part in the debate which will result in a new agenda on disability.
Jessica Williams, the author of this book, is donating all royalties due to her from sales to a fund to be given to charity. Icon Books, the publisher, are matching these royalties with the same amount again. Voting for the first six month period has now closed and the winner was Girlguiding UK who received a total of 10099 votes, 25.42% of the total votes cast. However voting has now re-commenced, so please visit the website and register your vote.
Special Abilities Training Packages and Information Manuals Special Abilities provides training packages and information manuals around special needs issues and other subjects. Over the years they have been able to support hundreds of parents / carers of disabled people to access information and services available and have now produced five national disability information manuals to assist in various matters around disability. Child Passports The pocket passport has been designed for disabled children due to many parents / carers requests for such a product to be made available for their children in a accessible and fun way for children to explain their needs on a day to day basis and in situations where they may be asked about their disabilities, their like dislikes and other essential information about themselves. For further information on both these items contact Gillian Archbold Special Abilities Training and Information Manager.
Family Support Service Earlier this year Contact a Family launched a new Family Support Service in some areas of the UK. A team of experienced family workers is now available to to provide advice, help and emotional support to parents who are facing difficulties without support from other services. Examples are parents whose children do not meet the criteria for local statutory help or those who have diffculty in getting help to which they are entitled. The family workers are flexible and will visit familities at home and generally try to fit around the family's needs and time tables. Parents may refer themselves for help and other workers may also refer. Further information can be obtained from Pauline Shelley.
New Leaflet for Parents Contact a Family has recently published a new leaflet for families called 'Concerned about your Child?' which has been developed as part of the 'Parents and Paedtricians Together' project. This colourful leaflet explains to parents what help is available and which professionals might get involved if their child has a development delay or problem around feeding, speech, coordination, teeth, toilet training, learning, behaviour or sleep. It has been developed to encourage parents to talk to their doctor or health visitor should they have any concerns about their child's development. It can sometimes be very difficult to judget whether help is needed but for children, getting help early on can make a real difference to their developement. To order copies of this leaflet contact Sheila Davies.
The Pounds for Parents Campaign aims to ensure families with disabled children claim their full benefit entitlements, tax credits and other concessions that they are entitled to. The campaign funds a welfare rights specialist who is available via a freephone helpline to check families' benefits and tax credits. If you would like a benefits check call 0808 808 3555 Monday to Friday 10 a.m, to 4 p.m. and Mondays 5.30 p.m. to 7.30 p.m.. It will help if you have the details of the benefits that you currently receive to hand when you telephone. The call is free and confidential and access to interpreters is available. Parents can become involved in the campaign by telling their stories to the media. If you are prepared to talk about any difficulties that you have had with things like finding out what you were entitled to, filling our Disability Living Allowance forms, claiming tax credits or are prepared to be interviewed about living on a low income. For more information without obligation email Contact a Family.
The Archives of Disease in Childhood (ADC) journal has a family page called 'Backchat' and they are inviting contributions from children or young persons about their experiences of ill health, chronic disorders or their contacts with the health care system. The journal goes to all paediatricians in the UK and many others around the world through library and institutional web scubscriptions. Submitted pieces must be no more than 800 words but can be prose, poety or illustrations. They are required to be submitted online by using the 'Submission and Review' link. Successful authors are paid £50. ADC will take pieces from parents but only as a second priority if there are no suitable pieces by young people. For further information contact Dr Harvey Marcovitch, Backchat Editor, Archives of Disease in Childhood, BMA House, Tavistock Square, London, WC1H 9JR.
Final Word
Thank you to everyone who has helped out with this issue, Alan and Elizabeth at the Beggs Laboratory, Wendy and Anne at the Myotubular Trust, Jacqueline for the information on the Netherlands get together, Louise at Contact a Family and Michael Abram, also known as my dad, for all the back room stuff he does that enables me to produce the Information Point and this newsletter and especially for many of the photos in this issue. Do you have any ideas for features in the next issue? Do you have some information to share, a story to tell or an achievement or milestone you would like to see in print? The newsletter is read by people worldwide - families, charities and medical professionals, our readership is growing all the time and contributions from outside of the UK are most welcome. Please write us, we would love to hear from you.
~ We are looking for a sponsor to help with day to day costs of running the costs - please get in touch if you can help. ~ Remember! Don't throw your toner cartridges away. 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 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 Peter Lawson at the Muscular Dystrophy Campaign on 020 7720 8055 or email info@muscular-dystrophy.org Used postage stamps can also be sent to Peter Lawson at Muscular Dystrophy Campaign, 7-11 Prescott Place, London SW4 6BS.
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