22 November 2005

When I was first diagnosed I contacted the nearest MD support Group, I was told that they were mainly the parents of children with muscular dystrophy and they campaigned and fundraised. What I wanted was to meet other adults with Becker as I was in my thirties but with Becker muscular dystrophy (BMD) the cases are spread out which means you are less likely to meet someone else.

"We want to live life with Becker muscular dystrophy not just put up with it. "

I determined that I would do what I could do to help any group set up to help others with BMD and eventually meet up with Billy & Lynda Murphy who had organised a Becker Support Group Meeting. Unfortunately after a few meetings we stopped because numbers had fallen to just three or four as people found it too difficult to travel as we were so spread out.

A year or so later a North West Becker Event was arranged that I attended and met some others, at the end of the event they asked for volunteers to look into setting up a Becker Support group. 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 five or six meetings over 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 couple of us still continued attending numerous events in the North West and gained a dozen contacts.

The breakthrough came in March 2005 when we were asked if we wanted to launch our support group at the Liverpool event, we were not ready but I said yes let's do it. I decided that we had enough ideas to launch a group with and we would not discard the other ideas - we could bring them in later.

I worked on getting a webpage up and running and 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 launched in two stages, stage one at the Liverpool event was to start building members up, listing them on the webpages 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 set up.

To be honest the group has not grown as we had planned - we have about 40 members on our site but they are still spread out too much so we cannot yet start any local groups. On the positive side, last week I was contacted by a member who told me he had made friends from the group and met another member of the group. A few days later I received an email from another member saying "you may not know it but you have helped me in a big way". I also met a family while on holiday in the USA I talked with them and got to understand that what families needed was slightly different to what we as adults wanted.

These events have shown me that we are doing a good thing and 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. It took a great deal of time to make it attractive and keep it full of useful items but we still need to do more. We have asked a few mothers what they want from the site and with their help, and advice from others, the site will start to look to help families as much as we can. We want the site to give answers to questions, links to helpful sites and be a site that people want to look at. We want to live life with Becker MD not just put up with it. Life is for living.

For more information, please email beckersmd@hotmail.com