Friday, 24 May 2019

PNF webinar

The PNF webinar was a success, we had an international forum of very experienced doctors explaining the procedure. I hope you all managed to watch it, but if not, here is the link to the webinar on YouTube: https://youtu.be/mLXOlEJbkkY
So now on to the next idea, the doctors thought maybe a webinar on 'the future of Dupuytren's disease' with recent research explained? I am not sure that will fit in an hour!
If anyone has an idea what they would like to see covered, let me know. Ledderhose, Peyronie's and radiotherapy are still on the list, as webinar or in lecture form.
Special thanks to our international speakers Dr Gary Pess and Prof Steven Hovius. Our doctors are the best!

Tuesday, 14 May 2019

Can you help?

Oyez oyez! Calling all people in Oxfordshire UK or surroundings who have personal experience with Frozen Shoulder. NDORMS, the Nuffield Department of Orthopaedics, Rheumatology and Muskuloskeletal Sciences part of Oxford University, want to study Frozen Shoulder. Please help them if you can! email:  aff@kennedy.ox.ac.uk
 
 

Friday, 3 May 2019

Big news and bigger news!

I am not sure which is the biggest news item here!
We are planning a second webinar. This one will be on PNF, speakers are Prof Tim Davis, Prof Steven Hovius (who did the lipofilling trial), Dr Gary Pess (who performs more PNF than anyone else in the US probably), Prof Chris Bainbridge (from the Pulvertaft Centre in Derby), and patients Ian Ireland (personal experience) and Anna Schurer (PNF and the NHS).
It will be the 20th May, at 8pm GMT. As before it will be using a program called Zoom. We have quite a few places left, so if you're interested and haven't let me know yet, send me an email!
anna@dupuytrens-society.org.uk

The second news item: Oxfords own professor Jagdeep Nanchahal has won the 2019 Dupuytren's Award, for his work on adalimumab in Dupuytren's (the RIDD trial) This award was sponsored by patients from the BDS and the (now defunct) American DDSG Facebook group, as well as the IDS (International Dupuytren Society). A worldwide acknowledgement for the study. Many congratulations to Prof Nanchahal and his team.
https://www.dupuytren-online.info/dupuytren_award.html


Monday, 18 March 2019

First webinar and follow up?

Well we started talking about the next webinar! No details yet, but more to follow when I can share. Meanwhile feel free to watch our first webinar here: Webinar2

Friday, 22 February 2019

Liverpool research participation

The Liverpool group who are doing research would like more participants for their meetings! If you are interested, look at the poster and contact them or me!
The first meeting was informative and pleasant, great to see researchers working on our problem, and lovely to meet other patients.
Have a look at the poster.

Friday, 1 February 2019

Liverpool research meeting

A week ago I was a guest at Liverpool University, attending a patient meeting organised by Dr Elizabeth Laird and Dr Emma Beamish of the Dupuytrens Research Group. They had invited several patients to attend, two via Skype link and the others in person.

We heard about the research they have started, hoping to get more clarification in the role of several proteins on developing Dupuytren's tissue. For this they need fresh samples of removed Dupuytren tissue, so they have asked nearby hospitals for help.

If any of you is approached to ask to donate their tissue to science  rather than to the incinerator, this is your chance to help future generations! Helping researchers helps us all.

It was a good meeting, lovely to meet the other patients and very impressive to see the lab where the work is taking place. Fingers crossed for a result that could maybe result in a treatment.

Saturday, 29 December 2018

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!