The Beginning
In late 2002 a Northwest Becker event was held in Winsford and at the end of the event they asked for volunteers to look into setting up a Becker Support group and a number of people including myself volunteered .Early the following year we met together as a focus group and we came up with a number of ideas of what to do and we decided to adopt the name Becker United. We had 5 or 6 meetings other the next year and a half and we produced a newsletter but because we lived too far apart from each other the meetings stopped. A few of us still continued attending numerous events in the Northwest and gained a dozen contacts with the intention of building up enough contacts to start a support group.
The breakthrough came in March 2005 when we were asked if we wanted to launch our support group at the Liverpool Becker event, we were not really ready but we said yes lets do it. We decided that we had enough Ideas with which to launch the group and we would use the other ideas at a later stage. I worked on getting this web page up and running and we changed the strategy, we had failed previously because we were too spread out so we decided to launch as an Internet based group. The group was to be launched in 2 stages , stage one at the Liverpool event was to start building members up ,listing them on the web pages by area with Email addresses. The Webpage was to be the hub with information and listings to help members find others in their area to be able to contact and meet with. The second stage would be much later when clusters of members would be found in some areas and a local support group setup.
Becker United now
Becker United is at present run by Me Tim Davies and with help from our members, its hard work and takes a lot of time but soon I hope to get help with running the group by getting some local person or persons to help with different aspects. I do get Items supplied by some of our member’s e.g. The Living with Becker MD stories ”Connecting with your son” “Breakfast at McDonalds” etc. As of the end of 2005 we had about 40 members but they are still spread out too much so we cannot yet start any Local groups so we still need to grow. I am encouraged when I receive confirmation that members do contact each other and I received an email from a member a while ago saying "you may not know it but you have helped me in a big way These events have shown me that we are doing a good thing that is helping and we need to change the emphasis slightly and take another step forward. One thing is that we now have www.beckerunited.com , no one could remember the other Web address not even me. We had only been giving the old Web address out to members via Email, but we are now seeking to let people know of it and use it. A great deal of time to make it attractive and full of useful items with the help of the members we still need to do more. We are working with help from the Muscular Dystrophy Campaign to make the group more effective we want the site to give answers to questions, links to helpful sites and be a site that people want to look at.
We now get a great many hits on the site from the
Becker United had been lacking in its help for families and
so while on holiday in the
I have just read some of
the stories on living with Becker MD and have found it quite encouraging.
My 10 yr old son was
diagnosed with the condition in Jan 2006 and it was a complete shock. There seems
to be no family history of it. I have also recently discovered that I am a
carrier of it.
I am not sure what the future holds for my son We seem to go from 1 hosp
appointment to another and there seems to be no answers to our questions and
very little hope! But after reading your stories I feel much better and don't
feel as alone.
We are making a difference we are not there yet but we are on the way and with the help of each other we can make a bigger difference.
What’s next?
In
2006 we will get an increase in numbers of members but we need to be able to offer
information and help to everyone. I have been asked to speak at a Becker event
in
In March 2006 Becker United was One Year old so I did a page to commemorate the fact .In 2007 I have bigger ideas as I am also a trustee of a local college, the college is being refurbished a lift has been put in and we have an upstairs hall which is being re-decorated and the floor sanded and re-varnished the disabled toilets are also being refurbished. The room is perfect for functions and conferences the only problem was that it was upstairs and the toilets were downstairs now a lift is installed that problem is removed. I will look into holding an event next March / April which will probably include other forms of muscular dystrophy but at present this is just and idea for next year on other problem is parking which I will need to look at.Link to the college website
We will also be looking this year for help in running the group especially a mother who will be able to deal with the family pages we are looking locally for this but we will still be wanting members to Email us their stories to add to the pages and other people to link their pages to ours. If someone is not local and wants to do pages for Becker United then please do so and Either Email them as an attached document or upload them to your own site and I will link to yours we want Becker United to grow and to do so needs more help.
Becker United is there because someone decided to dig their
heels in and to do what it takes to make it work, the original focus group
provided a lot of Ideas including the name and the Newsletter that the webpage
was based on the group would also not have come about if we had no members so we
are all important. We have 40 members out
of maybe 800 people with Becker MD in the
Tim Davies 1st May 2006