 | 
| Welcome to my home on Bebo - my name is Toni, I am a 30 something female from the UK.
In 2007 I heard about the Be Cause Awards which are run by Bebo and UnLtd. I decided to enter my website, the Information Point for Centronuclear and Myotubular Myopathy and was fortunate enough to become the first Be Cause award winner. You can find out more about the Be Cause Awards at http://bebo.com/Profile.jsp?MemberId....
Aside from running the Information Point, I work full time as a Web Editor and I am a part time Open University Student, currently studying their 'Innovation: Design for a Sustainable Future' course.
I love to read and you can find me at www.bookcrossing.com/friend/tonilouisa. I also enjoy listening to music.
Visit the Information Point at http://centronuclear.org.uk.
Toni xx
Profile image © Stephanie Pui-Mun Law. | Gender | | | | Female | | | | Profile Views | | | 618 times | | | | Share the Luv | |  | 15 |
| | | | Toni's URL | | http://www.bebo.com/tonilouisa | |
Toni says: "Read our latest newsletter: http://centronuclear.org.uk/theinfor..." (30 weeks ago) me too! | Reply | | The Inspiration | | My father and I were diagnosed with the dominant form of Centronuclear Myopathy following muscle biopsy in 1998. Having encountered difficulty finding information about the condition on the internet I decided to set up my own website. I wanted to produce something productive and useful, that would ultimately help others in their search for information, bring sufferers together and create awareness of this rare condition. | | | What's the Big Idea? | | The Information Point, is a website for anyone affected by Centronuclear / Myotubular Myopathy, the aim of which is to outreach more families, globally, to give them information about managing the condition.
The website is run by me alone from my home. I work closely with other organisations, in particular, the Myotubular Trust, a European charity registered in UK, which is also run voluntarily. The Trust raise money purely for research into the condition, but as such get a lot of contact from families affected by the condition asking for more information. As they are not set up as an information site, they rely on directing families to my website for information on management of the condition, links and resources. The Information Point is currently the only organisation in Europe / UK which provides comprehensive information and resources for the condition. | | | What does the Information Point do? | | The Information Point provides a pool of information to help people who would otherwise be very isolated and alone, learn about the condition. This helps individuals to become expert patients by networking with others who have the same condition and encourages individuals to self-manage their condition from a health perspective. The website has 2 distinct elements – the provision of information and the sharing of experiences. It provides a link between family, clinicians, researchers and other medical professionals and so enables them to network their collective expertise. Also to raise awareness of the condition amongst the general public and the medical community, for example researchers visit the website and the stories featured there provide a human perspective to the work that they do. | | | Why Should the Information Point Receive Funding? | | As a rare neuromuscular condition, it is difficult to attract funding; many clinicians have not heard of the condition and information can be difficult to come by.
The Information Point provides a pool of information to help people who would otherwise be very isolated and alone, learn about the condition. This helps individuals to become expert patients by networking with others who have the same condition and encourages individuals to self-manage their condition from a health perspective. | |
|
ill give you double tomorrow 
xx
xxx
and there is no changing my mum and dads mind 
Read our newsletters:
Toni 0 ReplysDecember 2008: http://centronuclear.org.uk/theinfor...
August 2008: http://centronuclear.org.uk/theinfor...
June 2008: http://www.centronuclear.org....
The Myotubular Trust
Toni 0 Replyshttp://www.myotubulartrust.com/
Muscular Dystrophy Campaign
http://www.muscular-dystrophy.org/ab...
The Neuromuscular Centre
http://www.nmcentre.com/
Jack's Birthday Wish Appeal
http://www.chestnut-t...