Printing BDS things

I am happy to say that we now have a printing budget of £100 from a company that help charities, their link is now on our homepage and we can get some business cards for the trustees to hand out at various events or just randomly to anyone who shows interest in the conditions we have, hopefully we can make them professional looking and they will help further the charity and the work we are all trying to do.

We can actually spend this money on a whole host of things and will be looking into how best to spend the money, hopefully it is something that we can do on a year by year basis to continue to help us get what we need without having to spend money that has been donated so it can go to better use.

Now the fun has started and we are in the process of trying to design the business cards, do we go minimal like they were before, which I personally feel were too minimal (see above) or do we try and work a bit more onto it. Any thoughts are welcome. Note that we are going to put a generic contact e-mail on there so that we can save even more by printing the same cards for all of us. Admittedly on my first design I went OTT so below are the slightly more toned down ones.

changing the website

So we decided a while ago that our website was growing out of control. Henry Orton did a brilliant job on it, but now it was time for a professional to give us some input and see how we could make it easier to navigate without loosing anything, and maybe even add some of Gary's video's to the site.

 

Therefore yesterday I spend a few hours talking to someone I met, who does this kind of thing regularly. I think we spoke in English, but nothing like what I learned at school! However I have a reasonable idea what he meant and know what I need to do next, go through the whole site, check links and see if they still work and if they take the viewer of our site ( not good, better to let them open in a new link, fortunately he knows how to do that); decide on templates, search function, what needs to go under what heading, how many headings.. You name it, we need to decide on it.

Any input will be appreciated, just use the links on the website or facebook.

 

We are not doing a hangout today, but one or two of us may participate in the AGM of the International Dupuytren's Society. ( Gary, maybe myself) That will be interesting, they are a much bigger charity with links all over the world.

 

Time now to wrap a few Cheistmas present and write some cards before I start on the website I think.

 

Take care everyone, please don't forgetto give me your thoughts on the website and how we can improve it!



Anna

First YouTube video

Thanks for being patient, here is the first YouTube video, it is not perfect and I am sure I will update it but for now it is something at least. Would be great to get a few likes on it or a few comments on here as to how you would improve it (apart from voice over errors). 

An introduction to the British Dupuytren's Society

A good hangout

Today Anna and I had a good hang out which lasted an hour, shows that there is a lot to discuss for the BDS and that means that there is lots to do but that does mean time and with everyone working and in my case going on holiday in a week and having a wife who is expecting time is only available in limited quantities so we have to make sure we use it in the right way and on the right things. So in the coming week you will hopefully see another poll appear on the right on this page (please do both it is great to have some feedback) on some fairly big ideas that we would like to implement in about a years time should there be sufficient supports. 

We also discussed: 

• YouTube sign up and videos (seems to be dragging on but should be done in the next couple of days) 
• How to best use social media for optimal impact and awareness 
• Plans for BDS membership and benefits. 
• Improvements and additions to the website. 
• Trying to improve the ways that we communicate with the elderly demographic. 
• Business (charity) cards and their design
• Sites to sign up for free as a charity

That should be plenty to be getting on with for now.

My first week as a trustee

This last week has been my first as a trustee for the British Dupuytren’s Society (here after BDS) and I think it is fair to say that I have settled in to making suggestions and seeing what happens. We have already had 2 meetings since the AGM and a lot has been going on.

This week I have tried to find changes and developments that we can make to help improve the charities visibility and hopefully help to increase the income, not least through trying to come up with ideas for what I can do as fund raisers as surely this is the least I can do for the charity. Fingers crossed that in the next year you see some pro-active fund raising from me, the difficult aspect is getting other people donating as you can’t do so many things in a year and ask the same people to give you money over and over again.

So what are the changes that we are making and hoping to make?

I suppose that it is best to start with the obvious which is this blog. Many people will know that I am quite an experience blogger having come in contact with the BDS through my Ledderhose blog (see BDS website for links) and we all felt that a blog could bring something extra to the charity. The blog is designed to be a less formal way to stay in touch and interact with patients by keeping them more up to date with what we are doing (in our own time remember) on a weekly or monthly basis) and hopefully how these changes will impact the all-important patients (which don’t forget includes us).

Another fairly small and quick change that I have implemented and just needs some more linking is to make a BDS shop – see here http://www.cafepress.co.uk/britishdupsoc. The shop is free to run and was quick to set up and any profits will go to the BDS, so if you fancy a jumper to support us or a bib for your baby, certainly one I will be thinking about, then have a look round and give us some support through not only the profits but also through the awareness you can raise by having a bent finger on your chest.

I think that is it for the main changes this week, but in the long term we really hope to make a difference, from my point of view as a Ledderhose patient it would be great if we could get more recognition of radiotherapy as being a good treatment option for Ledderhose and maybe even one day get it on the NHS, surely having patients undergo a little bit of radiotherapy for 2 weeks in total must be cheaper than performing surgery and managing recovery and physiotherapy and then probably having to perform that again and again because it keeps on coming back? From a Dupuytren’s point of view I am sure there are lots that we can do but one of the things that has stuck with me in the first week is that patients are not getting referred to specialist from their GP until the disease has reached a point where their treatment options are limited and again this means that radiotherapy cannot be used. I am not saying that I think radiotherapy is the be all and end all but I think that is a lot of patients it can work and it can therefore stop unnecessary surgery as it can stop disease progression and prevent surgery.

It also turns out that this week is trustee week, I have only been doing it for one week so I’d like to acknowledge the work done by the past and present trustees as the BDS and perhaps together we can take this charity to another level.