Our Friends
The Information Point would not exist without the following people and organisations - thank you one and all.
Wendy, Anne and Mel at The Myotubular Trust
For being so very supportive and general all round good eggs, regularly allowing me to bounce ideas off you and for helping when times get tough. You're the best.
Community Champions Fund
The Community Champions Fund was set up by the Department for Education and Skills (DfES) to help support and develop the work of people who are involved in, changing their communities for the better.
In March 2007 the Community Champions Fund awarded the Information Point a grant of £2,000 for our work.
Net-work
Since February 2006, Net-work have provided our web hosting and domain name. At a time when nobody else would sponsor the Information Point, they volunteered their service free of charge.
The UnLtd Millenium Awards Scheme
In 2007 the UnLtd Millenium Awards Scheme awarded the Information Point £1,000 as part of the Be Cause Awards initiative.
The BeCause awards were operated by UnLtd and Bebo, the social networking website. Judges from UnLtd and Bebo selected projects they believed to have the potential to make a positive impact on society. The whole Bebo community was then asked to vote for the best project.
Yorkshire Building Society Charitable Foundation
During July 2010 the Yorkshire Building Society Charitable Foundation held a Make a Difference Week in its branches across the UK which resulted in the Information Point receiving a donation of £100. During the week long campaign, customers of the society, staff and the general public were invited to nominate a cause that they would like the Foundation to support and members of the Chester branch kindly nominated the Information Point.
The campaign is linked to the Society's unique scheme called 'Small Change, Big Difference', which largely funds the Foundation. Through this scheme, pence interest on members' accounts is donated to the Foundation and is then used to help many different good causes and charities throughout the UK where even a small donation can make a big difference.
Rebecca J Kent
In 2010 it was decided that the Information Point required a fresh look in order to show the way that centronuclear and myotubular myopathy affects both adults and children. It was decided that the best way to do this, was with the creation of a new banner image, for immedate impact and to give a community feel to the website, so that anyone who is affected by the condition, would feel welcome.
The new banner image was created by Rebecca J Kent, a graduate of Manchester Metroplitan University in the UK. Rebecca took time to learn about the condition, looking at photos of those affected and the different ways the condition affects individuals and incorporated the physical aspects in to her work, to create a truly unique image for the centronuclear and myotubular myopathy community.
The Beggs Laboratory
at Children's Hospital Boston and Harvard Medical School
A human geneticist from Massachusetts, the principal investigator and driving force at the Beggs Laboratory, Alan oversees all the of the laboratories research and mentors all lab members.
- Elizabeth Taylor DeChene, MS CGC
A genetic counselor from Delaware, Elizabeth is the research co-ordinator for studies on congenital myopathies and is currently working on projects on CNM and CFTD.
Sophie Hughes
When the Information Point applied to the UnLtd Millenium Awards Scheme for a Be Cause Award, Sophie rallied all her friends on Bebo to vote for the Information Point. Without her efforts we would never have received the award.
Michael Abram
My dad, for being supportive of the website since day one, for helping with technical bits and bobs and for his newly acquired marketing skills which sees him tell everyone and anyone who will listen about the Information Point website and webshop.
Sally Otter at Muscular Dystrophy UK
Thank you for working so hard on my behalf to answer all my many questions.
World Flags
The flags that appear on these pages to show where events are taking place are freeware images courtesy of World Flags.
Our Supporters
The Information Point is grateful to the following websites who provide links to us on their website, thus helping to raise aware of Centronuclear and Myotubular Myopathy.
And Finally
Everyone who has so generously contributed their story either for the website or for one of our newsletters.
So many of us are told when we get our diagnosis, how incredibly rare it is and that there is next to no one else with the condition and whilst there is no arguing the fact that this is a rare condition, being able to show the diversity of people from around the world who are affected, really helps dispel the notion that we are alone and educates the wider world about the complexity of the condition and what living with a diagnosis of CNM / MTM means to different people.
Every story helps to raise awareness and shows someones reality of living with CNM / MTM. Thank you to all of you who have taken the time, to share a part of you and contribute to the work of raising awareness.
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