new radiotherapy videos

We have started recording new (short) videos explaining a bit more about radiotherapy, each based on one question. Dr Shaffer has made a list of questions he gets asked many time, and we are going through them together. The plan is for them to start appearing on our YouTube channel shortly, and in anticipation Dr Shaffer has posted a new blogpage as well: When is it too early to have radiotherapy Preparations for the online Dupuytren conference are well on the way, as the main accent will be on research we are hoping for a few good webinars or online meetings, the abstracts sure look great! As soon as there are videos for patients to see we will let everyone know. Join us on our Facebook group, or send me an email if you have any questions. Take care everyone!

Webinar and New Year

Well the webinar has gone well, and we are already thinking of doing more of them!

If you want to watch the webinar it can be accessed online.

We also managed to have our AGM, it is not an easy feat to get enough trustees online at the same time, as inevitably there will be someone held up in clinic or theatre, another out of the country for conferences and lectures. But we managed.

For next year we will continue to support patients as best we can. We are hoping to do another webinar (or two??) and maybe some question and answer sessions on our closed Facebook group.

The next Dupuytren Conference, planned for 2020, has been confirmed and will take place in Oxford. This will be a meeting of the top doctors and researchers, and we are very excited about it.

As always any help fundraising, organising things or web design and maintenance will be greatly appreciated, just get in touch if you can spare an hour here and there!

 

Meanwhile I hope you all had a good Christmas and wishing everyone a happy New Year, with good health!

Appeal

 The appeal to NICE has been send (twice, the first one was rejected because I also used the email address they send instead of only the website submission- so don't supply an appeals email address if that should not be used!) and apparently if you submit in two different ways it cancels each other out. So I submitted again, only via the website this time.

 

 Now I started looking at writing a bit about Ledderhose for the book Wolfgang Wach is planning, a completely different challenge, and the two-week deadline he gave is already past but I told him the NICE appeal came first. I need to calculate p-values for this! I really can't remember how to do that, just remember from college 30 years ago that p < 0.05 is significant. So that will be a challenge and a half, or maybe a bit more even. At least I have 2 weeks off work, so I have the time to look into it.

 

 Louise Banks is doing a really good job for us, she has lots of ideas and knows how to give out press releases and look for funding. She is a valuable member of our charity. Together we have decided to look into a new logo for the BDS, it has been on the agenda for a while but we really want to do something about it now. So if anyone has artistic talents and can draw hand with contracture and foot with nodule in a simple but clear way, let me know or send a picture! I tried to draw someting but it looked more like a cloud in the sky. Or something Freddy Kruger had gotten hold off.

Keep your hands and feet warm with this nasty wet weather folks! Love

Anna

Summertime

Time for an update, it has been a while.

Groningen: the conference was good, a lot of very clever people all discussing what they can offer patients and what research needs doing to improve the treatments. There are still distinct fractions, such as radiotherapists versus surgeons, but there was good conversation also between the groups so I hope the differences in opinion are getting less. After all we all want what is best to slow or halt the disease, never mind how it is done. Abstracts of the presented papers can be found online: http://dupuytrensymposium.com/program_2015.php  (scroll to the bottom) and the talks will be put on YouTube.

The Dupuytren's Foundation is hoping to set up a databank with samples from as many ppatients as they can get, to aid in identifying the cause of the disease. PLEASE HELP!! Go to this website http://dupuytrens.org/get-the-newsletter/  and register for the newsletter, they will let you know as soon as the study starts . It would mean having a bloodsample taken, that's all. Anyone with Dup's or Ledderhose in any country, please join.

Since then the website is being transferred, we found a good server but it means I can't update any pages untill the transfer is complete.

I have met up with Lorraine and Louise from Say Communications, Sobi has kindly agreed to fund a secretariat function for 2 days per month for the next 6 months, and Louise will look into funding, membership, a new logo, newsletters to GP's.. all these things we wanted for the BDS but did not have time to do. So all in all the BDS is moving forward. We have 350 followers on our Facebook page, and the Dup Ld and related conditions group is oding even better with 406 members.

All we need now is a cure!

Anna

Conference almost here

Just a quick note- the Dupuytren's conference is on Friday and Saturday, Gary and Anna will be there (Gary is presenting the results of the survey even) and we hope to report back afterwards on what we have learned. In the mean time check out the new Facebook group DART, they are collecting a lot of good information for anyone with Dupuytren's, not just those who want radiotherapy.

More after Groningen!

No Guidance yet- nice one!

The time has come for NICE to make their decision, and it seems they are stuck. They have decided more research is needed, thanks to the comments of the handsurgeons (thanks BSSH!) and the patients (meaning: all of us!) who did not want them to reject collagenase. This is good, it means for now it is still up to individual PCT's to decide but they are allowed to accept it, so we still have a chance of getting the treatment that suits the contracture (not all contractures are suitable, some are better treated with surgery).

I am relieved, though I see more work on the horizon for us. But I am sure it will be worth it.

I have decided for now to give up on the idea of doing a science part for the website, my anatomical drawings were not quite up to scratch and my understanding of the affected pathways is decidedly below scratch, so I will look for a few good pages already on the web and seek permission to link to them. I'm sure I will find something.

Designing a new logo has hit the same snag- may lack of drawing talent. Time to think of other ways to get a good logo!

Gary and I are busy planning for the Dupuytren's Conference in May, we have booked accomodation and I have booked my flight, progress is being made! Gary will be presenting the conclusions drawn from the survey he posted a few months ago. I will be trying to gather as much information as I can about recent research and new ideas. And we will have a good time while we're at it!

Our website has been down for a day (or rather: the server was down) but thanks to Richard Proctor of Waveney.com who hosts the site and spend his evening after work sorting it out, the problem was sorted within a day. Good going!

That's all the news for now. Take care of your lumps and cords, be healthy!

 

Well, the first part of the AGM, with active trustees of the charity, was a wash-out.  For various reasons only 3 people showed up for the e-conference. It made for easy voting, everything was accepted (new treasurer, Judith just trustee, Anna as chair, membership to be set up) but there was no discussion possible really about the charity moving forwards.

So what's next? I have found a website that may be useful for setting up membership, membermojo, messages some organisations that use it via Facebook and they seem quite happy, so I'll have to work out how to set that up. Maybe this weekend. Apart from that we will start thinking about the upcoming Dupuytren's Conference, next year in the Netherlands. What can we contribute, how many of us want to go, how do we finance it. And we will have to find some more people willing to help with whatever needs doing. That is the next big step, try to organise another electronic conference. But after the failure of the last one, I'm not sure what to do different this time.

On a positive note Judith became a grandmother, a month earlier than expected but everything is ok, parents and baby are very well, the baby is extremely cute and Judith has her work cut out helping the new family. Congratulations to all!