Research Participation Opportunity and New Website

December 16, 2016

Welcome to our last newsletter of 2016! This is just a couple of announcements that may be of interest to you. We will send a full report of recent activities in January. Thank you to all of you who have been busy fundraising for Facial Palsy UK, we really appreciate your efforts.

New Website

Big Lottery LogoAs you can see, our new website is now live. We welcome all feedback. It is now mobile friendly and hopefully much easier to read and navigate, do let us know if you have any problems with it. Please note that we now have a Join Our Community page where you can tell us what you are interested in hearing about. This will make it easier for us to provide information that is more relevant to you. For everyone who signed up through our original mailing list you will still receive all of our emails for now. We do encourage you to sign up via the Join Our Community link as well though and we will then edit your preferences to suit you. We will merge these with your existing email settings so you won’t be duplicated in our database. For example, this will mean that we can send information about Family Days just to parents of children with facial palsy rather than blanket emailing everyone with reminder emails. We are very grateful to the Big Lottery Fund for funding our new website. Please note we are currently seeking funding to develop a separate health professionals website, more news about that in the New Year.

Research Appeal

Since July 2014 Facial Palsy UK has been fundraising for a Research Priority Setting Exercise. The aim is to produce a list of priorities published for researchers looking into the causes, treatment, prevention and consequences of facial palsy. We were originally going to do this in partnership with the James Lind Alliance, at a cost of more than £20,000. After discussions with the Centre for Appearance Research based at the University of the West of England in Bristol, we have found a more cost effective way to complete this project and achieve the same outcomes. We will be operating on a very tight budget but the monies previously raised (£9,254) will fund a good proportion of this project enabling us to get started. We will be bringing together people with facial palsy, their carers and clinicians on an equal footing to identify what is important to all groups.

There are full details on our website or you can download the letter of invitation here. Please note that participants must be based in the UK. The first meeting is on Thursday February 23rd at 16:00 and will be held in central London. If you are interested please visit the website page or download the letter asap and register your interest, as places at the face-to-face meeting are limited. Those who cannot attend the face-to-face meeting can participate by online survey. Please do share with others you feel may be interested in taking part.

And finally..

Thank you as always for your support. Don’t forget if you are last minute Christmas shopping that if you shop via Give as you Live you can raise a few pennies for Facial Palsy UK at no extra cost to you. Someone recently mentioned that they thought it didn’t work with Amazon. It does work with Amazon but you need to click through from the Give as you Live website first, it’s just they don’t allow the Give as you Live toolbar on their website. Also there is going to be a charity football match on Boxing Day morning organised by the Greyhound Inn in Arnold, Nottingham. If you are local please go along and support the event. Thank you again to all our amazing fundraisers! We wish everyone a wonderful Christmas break and a Happy New Year.

If you would like to contact us about anything in this newsletter please email or call us on 0300 030 9333. Thank you again, until next time.

News Categories: General news  / Research  /    ||    Tags: facial palsy research  /

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