New Dupuytren video series starting on YouTube

One of the members from our Facebook group has started a series of videos about living with Dupuytrens at a young age. Here is the first of those videos. https://youtube.com/playlist?list=PLmj3PZBta8umXoweLqbQzSZpvCR296iPa

Radiotherapy Video

We have a present for you! With thanks to Dr Richard Shaffer for the lecture and the interview, and to Mr Ian Ireland for the editing. 

A video on Radiation Therapy for Dupuytrens and Ledderhose. 

https://youtu.be/4hs66soALbM

 

We attempted a Teams patient meeting last Saturday. It worked, and I am planning to do it again. if you're interested, send me your email address.

 

More news coming soon.

 

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

Sign ups

So this week we have been busy trying to do lots of background things, as you will have hopefully seen on Facebook there have been a few messages from Dr Chris Bainbridge (if not look now!) and it is interesting to see how things are going for him and what the outcome of the survey will be, fingers crossed he shares.

Pfizer have been in touch and so I have done a few bits and pieces that they wanted from us so they can help us. I have also contacted the business card guy and waiting to hear back.

We have completed the sign up on YouTube and we are just awaiting to hear back that everything was ok, can't see why it wouldn't be and hope it doesn't take too long, like the Google Grants that was applied for before I started.

In other news I have started the process of becoming a badminton coach which I am only announcing here as when I hopefully become fully qualified I hope to do coaching days to raise money for the BDS. This is also a sign of how far my Ledderhose has come as before radiotherapy finished 4 months ago I could barely walk....

I also have a new Dupuytren's glove(s) from Anna so I am going to have a try with them and see what it is like, after all I do not have this condition and it will be interesting to see how hard it is to do things with them. I will report back on how I cope, FYI I will not be taking them to work as typing is the main this I do I don't think the boss would be too happy, maybe I can arrange to do it a way to raise awareness. I am now away on holiday so hopefully there will be some updates from YouTube etc when I get back.

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.

What has happened in the last couple of days?

Right well in the last couple of days I got my Dupuytren's e-mail so you can all contact me through that, it is (replacing at with @) Gary(at)dupuytrens-society.org.uk and this means that I am now able to try and set a few more things up. So keep an eye out in the coming week for the YouTube account a few videos, will be sure to announce it here and on Facebook once we have our first video go live.  

How are things going though? Well in under a week this blog has already had over 100 pages views which is great, thanks everyone, and although the shop may not have sold anything in its first few days it is now there should anyone want to get anything.

I also now have access to update our website so hopefully we will soon have the shop and blog available through the website although I think I will need to try and remember some HTML before I do anything too tricky however Henry has offered some assistance. It should also be possible to put the twitter feed, as shown at the side of this page, onto the website which means the new blog posts will appear straight on there along with any other news we announce through twitter.

We have also had an offer for some free business cards, can't remember what I have said before but I think that is is likely we are going to go ahead with and will keep you updated. It will be nice to have something for me (I have not had business cards before) to give out should anyone ask me about it, which I think has already happened a couple of times in the last week.

Hopefully tomorrow Anna and I will be having a meeting and we can get on with signing up for a few things and discussing some of the more ambitious long term ideas that I have, which if you and we are lucky you will hear about in the next year or two or five. 

What have I done this week?

In response to the post made by Anna I can say that my wife and I are fine I just didn't have the time for the hang out this evening :-) (This was pre written and ready to post this evening after the afore mentioned missed hand out).

Well this week has again been quite busy. We have been working on preparing some videos that help to explain some of the basics about the charity and what exactly Dupuytren's and Ledderhose are. This will help give us another stream through which people can access the charity and it is also a great way to interact with people as reading a lot of text can get a bit boring (honestly what is to come in this post is really exciting so read on....)We are also setting me up an e-mail account so that I can set up the YouTube account to upload the videos to, I am sure links will be posted from here, or they can even be posted on here as well!

We have also been following through with some of the things that we mentioned last week and I am looking into getting reduced price software for the charity that should allow us to do things in an optimised manner. The more professional that we can make things the more chance we have of raising the money that we need in order to make the changes that can make a difference to patients.

Ledderhose Logo 

One of the ways that we might be able to raise money is through give as you click schemes, basically we try to get as many people as we can to pick the charity as their 'chosen one' and before they shop they visit this site and click the link to the shop they are going to use and the BDS will get about 1% of the sale price at no cost to us and at no cost to the buyer. So, once we have done that it would be great if you could sign up for it, we will keep you posted and even if you just manage to raise a pound a month through using it, if 100 people do that we could be on for £1000 a year, not likely but would be fantastic given the size of the charity.

There are also certain places that will give you free charity business cards if you in turn support them back, just simply by telling the trust and saying that they are proving them, so this is an area we are looking into as a possibility for not only business cards but also things like leaflets.

Dual Logo 

What else, oh yes, you can also now visit the shop and find our lovely new logos, this was an idea mentioned by Anna. Seeing as I am a Ledderhose patient and tend to focus a little bit on this (I am sure over the coming years I will become just as knowledgeable on Dupuytren's) that we should have a logo with a Ledderhose foot and I also made a dual one, see them above and check out the shop for all sorts of things with these designs on them...

 We could also have some help in coming up with ideas for several different things so please comment if you have ideas on what I / we can do to access a different market of fund raisers for fund raising activities as this would be great. We have a couple of ideas in the pipeline which we will keep you aware of once they become reality.