Comment

Comment by Celia on March 13, 2014 at 1:42pm

Sounds good Julie - well done  !  Claire I hope you got the address for the 22nd.

Comment by Jules UK on March 13, 2014 at 7:09am

Sorry, that shpuld read Jules!
C, do you want to add this feedback to our agenda at our get-together and I could bring my paperwork to date?

Comment by Jules UK on March 13, 2014 at 7:07am

Thank you, ladies, for your encouragement! The tele-conference was really interesting. As first contact between steering group members, it was about clarifying roles and responsibilities, agreeing the scope of the PSP protocol,(as outlined briefly on alopecia UK) and setting the agenda for the meeting in London in May. The ultimate aim is to identify questions about treatment unanswered by research to date, and to prioritise them in order to approach "partners" who could secure funding for targeted research. The whole process will take 14-18 months, and we will be invited to participate in completing surveys to help narrow the issues that concern us most. It's an established protocol that has worked for other conditions such as acne and vitiligo. The group has dermatologists, a trichologist, a psychologist, a wig technician plus alopecia sufferers.
This is a bit of a ramble and probably enough for now. But I hope the process will produce real results in raising the profile of our condition and encouraging research!! Please have a think, in the meantime, about what survey questions would be important to us. The meeting in May will be about compiling the first online survey....
Jukie x

Comment by Celia on March 13, 2014 at 7:03am

Hi Claire - I will e mail it to you through this site. Celia

Comment by claire on March 13, 2014 at 5:33am

Looking forward to meeting all you ladies next weekend 22nd. Just wondered what the arrangements are and how will you let me know the postcode. many thanks Claire. 

Well done Jules for undertaking all this extra work- looking forward to hearing all about it.

Comment by Debs on March 12, 2014 at 2:58pm

Jules thank you for representing us at the conference. X

Comment by Caro UK on March 12, 2014 at 1:55pm

Good luck for tonight Jules. You'll be fine! Let us know how it goes xx

Comment by Jules UK on March 12, 2014 at 1:10pm

Thanks C! I'm a little apprehensive; there was a lot of paperwork to read through, but it's well summarised on the Alopeciaonline UK website. There will be an online survey for us all to complete, in due course. Incidentally, there's a survey and opportunity for face to face interviews on www.survey.bris.ac.uk/nottingham/alopecia. It's a research study into everyday psychosocial experiences of alopecia sufferers, run by the University of Nottingham.
C, I'm also looking forward to our get-together. If you'd like a contribution to the table, let me know! X

Comment by Celia on March 12, 2014 at 12:47pm

Jules - I hope your Wed evening conference goes well.  Well done for doing that.

I am so looking forward to seeing some of you on the 22nd.  If there are any ladies who find they can now be free to join us on that day, please let me know. x

Comment by Caro UK on March 12, 2014 at 6:10am

I went to Cathy Brown for my eyebrows - she has an aesthetic beauty clinic in Mitchells Sutton Coldfield, West Midlands. She is a semi-permanent makeup and medical tattoo artist.  She trained with Nouveau Contour and is now one of their training team and teaches medical tatooing when she is not treating clients. Cathy is absolutely brilliant, great at putting people at their ease and really skilled. I'd thoroughly recommend her for anyone that lives in or around the West Midlands. www.cathy-brown.com

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