Toni
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Female,
15
- Profile views: 635
- Last active: 3 weeks ago
- www.bebo.com/tonilouisa
- Me, Myself, and I
- 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.
- 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.
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BeCause Award Update
Thought it was about time I updated on my BeCause award and recorded some of the good things that have happened as a result, both as a thank you to Bebo and UnLtd but also as a way of maybe encouraging others to apply.
At the beginning of 2007, I was feeling a bit despondent. I had been running my website, the Information Point for Centronuclear and Myotubular Myopathy, for 6 years - it had grown more important in my life than I had ever intended or imagined, having started as a project for a college course. My workload with the website had increased significantly, it was no longer just a personal interest and at times felt like a full time job. The website was being maintained using outdated computer equipment and borrowed software. I had been forced to upgrade to a broadband connection - it was an expense I felt I couldn’t really afford but a necessity if the website was to continue.
So, the website was costing me both time and money. I had started to search for funding but had no idea who to approach, so contacted lots of big organisations asking for sponsorship and subsequently had lots of doors slammed in my face. I got the feeling that a lot of organisations were not interested, because I was not a charity.
Then, about half way through the year, I heard about the BeCause Awards and thought it might be worth applying. I got short listed on my first attempt and a friends daughter rallied all her friends on Bebo to vote for my project. (Big hugs to Sophii). The Information Point subsequently won the first BeCause Award.
Winning was great for a number of reasons; I have been able to buy some new computer stuff including software and the grant money also helped pay for my broadband connection and some business cards. As a result of having proper software, my web design skills are slowly improving and the broadband connection, means I am able to work at a reasonable speed when updating the website and producing the e-newsletters, which I now do 3 times a year.
The money also enabled me to part fund a workshop at a Family Conference about Centronuclear / Myotubular Myopathy and paid for travel expenses to attend a medical meeting and speak to doctors about the condition. Sometimes with the website it is difficult to gauge the impact of my work but at both these events, I was actually able to see a difference being made, which was amazing.
In addition, getting the funding has given me a real boost to continue with my work. Having someone believe in me and actually putting their money where their mouth was and supporting me has been great. I am very proud of my award and now display the UnLtd logo on my website for others to see what I have achieved.
0 Comments 599 days
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Open University Project
This year, I am studying with the Open University on a course, which should, if things of to plan, be my final course for a standard degree. The course, is quite different to any I have done previously and rather than an exam, this year, I am required to undertake a project. Feedback is going to be invaluable to me during the course, so I have set up a design project blog at http://tonilouisa.wordpress.com/ to report on my progress and hope you will drop by to learn more about my work and get involved by taking part in the activities and sharing your views on the project.
0 Comments 642 days
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And the Winner is ...
I am very happy to announce that the winner of the July Be Cause Award is The Information Point.
When I applied at the end of June I never thought I would be shortlised, let alone win an award despite all my 'You've got to be in it to win it' bravado.
Thank you to all the Bebo members who voted and a special big thank you to Sophii. I couldn't have achieved this without you babe - you are the best! Thank you also to Alberto at UnLtd and everyone at Bebo; I look forward to getting to know you all better soon - thank you all for making me feel so welcome here.
Luke Parfitt and his idea Project MotoX was shortlisted alongside the Information Point. Luke wants to set up a motor park in a Merthyr Tydfil in Wales, which aims to engage young people in sports activities. You can learn more about Luke's project at http://bebo.com/MrLukeParfitt. Luke has been invited to apply for a Sports Relief Award in Wales to help support his idea. This is currently in progress and more news will follow shortly. Congratulations Luke.
0 Comments 831 days
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45 weeks ago
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Sophie.57 weeks ago
p.s no love
ill give you double tomorrow 
xx
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Sophie.57 weeks ago
aww thank you
yeh i can imagine! you must be dying to know the results! but im sure youll do great! cause you have done in all your other exams! oh and my mum sends her love and says she'll email you as soon as possible aww so all of your degree depends on this one exam! but if you have confidence then youll do great!! anyway mums urging me to go and get some sleep cause ive had 11o'clock nights this past week =S so night night ill write back soon
Sophiee xxx
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Sophie.57 weeks ago
Hey!! oh its great! im loving every minute of it!
ive done soo much in teh past month from walking the dogs next door to bottle feeding lambs! i did today and theyre soo cute! how are you then? been up to much recently ?
write back
xxx
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63 weeks ago
Sophie.
Heeeeyyyy
Aww thank you thats made me more confident with moving and ive figured that they can come and see me, 
and there is no changing my mum and dads mind
Yeah i hope i will we can go down surfing and diving, etc : )
=^)
Yeah i hope it is going to be nice, one of my walls in my bedroom is a shocking pink colour so i will have a headache every morning when looking at it lol
Haha, yearr they get a free holiday
Sophiee xxx -
63 weeks ago
Sophie.
Hey!
yeah its been fantastic thanks! im making the most of my friends while i can really im so so so so so upset im moving, no excitement i am going to miss my friends so much because each and everyone have always been there for me when i need them, so its hard to finally say goodbye
but anyway ,
ohh good luck! im sure you will do very well! Middle of october isnt that far away only a couple of months Haha aww im sure you will find something
Exams results were very good, im pleased with them
oh and i like your main picturee
Sophiee xxx -
Sophie.64 weeks ago
Heeeeeyyyy
havent talked in a while
How are youu?
up to anything good this summer??
Lovee sophieee xxx
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Sophie.68 weeks ago
hey sorry i didnt relpy quicker .. had to write an essay to my friend about what ive been up to Took me a while
And thankyouu yeh ive got mine crossed too!! i hope it all goes ok =S
Love Sophieeee xxx -
Sophie.68 weeks ago
hehe nah no worries Yeh they went really well thanks! im geting the results tomorrow .. realy excited!! 
And yeh i love it im wearing it again now
Love sophie xxxx
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73 weeks ago
Sophie.
Hey! im sorry i havent spoken in a while.. ive been a bit busy How are you anyway? up to anything this weekend? .. ive just had SATs! they went really well actually! im wearing the necklace you gave me now .. it goes really well with all of my outfits, i Love it!! Hope to see you soon!!
x x x -
89 weeks ago
Sophie.
hey
awh i think every one has got the cold .. most people i know have it hehe
im revising for sats for example in science were doing a revision plan .. its a bit boring though haha
Wow i hope your corse goes well i bet your glad there is no exam i would be hehe ^_^
xxx
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Sophie.89 weeks ago
hey
awhh i have a cold too and i gave it to my mum!! oops
Hope you feel better soon
weve been down to devon for the week .. it was fun except it was freezing cold some days!
im fine thank you
schools great! were doing alot of revising atm though :S
xxx -
Jade89 weeks agohiia x
who r yoo ...x ?
holla bck ...x
luvz jadee ...x -
Sophie.90 weeks ago
hello
im sorry i havent spoken to you in a while
how are you . ?
hope to see you soon
have a fab half term!
xxxx
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94 weeks ago
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Sophie.95 weeks ago
oooh yummy! i LOVE fish and chips!!
today i made cottage pie in food tech .. it went really well .. our cottage pie tasted weird lol
x x x -
Sophie.95 weeks ago
hiya!!
how are you?
had a good day??
hope so
x
x
x
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Sophie.96 weeks ago
HIYA!
im so so so sorry i didnt reply i was in devon for about 2 weeks until about 30mins ago wen we got back .. did you have a good christmas??
i did hehe x x x
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Sophie.106 weeks ago
hehe yeah we went to devon for a couple of days! wow i hope you did well! aw thank you i prefer my hair curled to straightened lol i have a very messy room , as u can see >.< xx take care =D
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...