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CENTRONUCLEAR AND MYOTUBULAR MYOPATHY INFORMATION POINT
United Kingdom

Established March 2001

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Welcome

What's New?

About the Condition

Reports

Research Developments


Ask the Experts

Ask the Experts

Terminology

Equipment and Suppliers

Personal Experiences

Childrens Websites

In Memory


Ways to Help

Make a Donation

Go Shopping

Participate in Research


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'It's Good to Talk'




Acknowledgements

Links to Other Sites


Special-Abilities.net


Muscular Dystrophy Campaign


Joshua Frase Foundation


the NeuroMuscular Centre

more Links ......

Toni's Website


Since 17th August 2003

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Welcome

Some of the pages on this site are presently under construction - please accept my apologies for any inconvenience caused, I hope to have things back to normal a soon as possible.

Hello and welcome to the Centronuclear and Myotubular Myopathy Information Point.

If you are visiting for the first time, then let me introduce myself ..... Iím Toni. In 1998, both my father and I had muscle biopsies and were subsequently diagnosed with Centronuclear Myopathy. 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.

The initial site concept was created in a web page design evening class at college and is now run from my home, in between working and studying with the Open University.

What has developed since then is a combination of reference material, stories and links to other sites. I do not claim to be an expert, the information contained here has been obtained from a variety of sources and collated here for ease of reference. My hope, to create a one stop shop where people can visit to find all the information they will need at their fingertips in the early days of diagnosis and beyond.

A big thank you to Wendy and Carol for the Important Medical Device Alert on Reusable Nebulisers and Legionella that currently appears at the top of this page. This sort of information is always useful to visitors to the site and I am always happy to include such items.

As always, I am on the look out for stories and phtographs for the site. I can't stress how valuable these are to people who have just received a diagnosis, as they offer hope and an insight into the condition, so if you have a story to tell, please consider emailing it to me at the address below.

The Information Point shop has now been open since September 2003 and I am very happy to announce that at the time of writing the total raised is £40.44. (Click here for international currency conversion).

The website fundraising poll has shown that most people think the money should go to an organisation such as the Joshua Frase Foundation and that the money should only be used for research and to help those with Centronuclear and Myotubular Myopathy, although there is also support for the money to be given to the Muscular Dystrophy Campaign.

If there are any other views out there for what should happen to the money, for example equipment, either for home or hospital use, please let me know.

In order to ensure that the best use is made of the money and that minimal administration costs are incurred, I propose to donate the money say 6 monthly or yearly, depending on the amount raised.

I am aware at the moment that the shops featured are exclusively British and therefore are not practical for international sales, with the exception of CD WOW who do offer free worldwide delivery - I am looking at ways of addressing this.

Information received from the Joshua Frase Foundation states that the cost of research is about $500 per fifteen minutes, that is around £268.00 at current exchange rates. The money donated to JFF is used primarily for research and minimal administration costs but the amount raised by the Information Point webshop so far, is less than a quarter of what is needed for 15 minutes research. For more information about research, click here.

Donations can be made directly at the Joshua Frase Foundation website.
Minimum donation is $40.

The Muscular Dystrophy Campaign have come up with a way to help the environment and help themselves at the same time. Each year in the UK we throw away over seven million toner cartridges from printers. These can be recycled and are worth a potential £18 million to charities across the country.

MDC in partnership with Reclaim-IT can collect cartridges free of charge from your home or work, school or university. Each one collected is worth an average of £2.50 to MDC. For more information or leaflets to promote the scheme, please call Elaine Bennett on 020 7819 1804 or email elaineb@muscular-dystrophy.org

When I updated this page back in February I announced that the site was about to celebrate its 3rd birthday - now I have another birthday to announce.

In August, my dad will be 60 years old.

Happy Birthday Dad - I love you. xx

At the moment there is no cure nor any drug treatment for this condition and until a cure or treatment is found, I propose that this site continues to speak up about the effect that this condition has on peoples lives and to bring those who have no choice but to live with the condition together.

Together we can spread the word .... together we can make a difference.

Please email me here with stories, website links or suggestions for the site:
toni.abram1@btopenworld.com

Toni, July 2004

Please tick all those that apply - all replies will show on the site as anonymous statistics only

These World Wide Web pages are published solely as a service for interested parties. This is a lay interpretation and should not be considered definitive by any means. I do not claim to be either a doctor or an expert nor do I pretend to be. Any decisions on medical treatments, interventions, courses of action, etc. should be made by the appropriate family members in consultation with the available literature and qualified medical professionals. Good sense should always prevail. I assume no responsibility for the use of the information,observations or opinions presented herein.

Links on this site have been included as areas of possible interest. I cannot vouch for the accuracy or suitability of information you may find on them, or on sites linked to them. Information may concern prognoses and must be treated with sensitivity. Be VERY wary of any site that offers treatment or cures and always ask for independent, professional medical advice before you contact a site of this type. If you are not medically qualified and find an item that worries you please discuss it with your doctor.

Winstons Wish























































































 
Copyright © 2003 - The Centronuclear and Myotubular Myopathy Information Point - United Kingdom