January 28, 2018
General e-newsletter: Our January update
A warm welcome to all the new members of Facial Palsy UK’s growing community, we are glad you found us. If you are newly diagnosed please make sure you look at the self-help videos on our website which have lots of useful information.
Facial Palsy Awareness Week 1st -7th March 2018
For Facial Palsy Awareness Week we aim to get across the message that this condition is not cosmetic and concerns what is going on inside your face and not necessarily what everyone else can see. We are asking people to paint numbers on their face and write a sentence to explain their number on a piece of paper or one of our poster templates (pictured). Then take a selfie and share it on social media to raise awareness. If you don’t want to take a selfie you could also write the number on the paper, or get creative, e.g. bake a cake with a number on it.
Examples of numbers could be:
- 72 hours to get steroids for Bell’s palsy
- 50 causes of facial palsy
- 20 years until I got treatment for facial palsy
- 0 facial palsy specialists in Northern Ireland
- 30 years until I met someone else with facial palsy
- 8 times a day I have to put eye drops in
- 3 times I have been denied funding for facial palsy surgery
- 30 patients I know that have been denied funding for facial palsy surgery
If you’d like to get involved you can personalise this to tell your story and raise awareness, and you can choose a different number each day during awareness week. You could also tie the numbers into fundraising challenges. One of our fundraisers is currently doing 50 days of awareness (for 50 different causes of facial palsy) and undertaking different sponsored challenges each day.
We have new posters and the selfie template available to download on our website. If you would like any templates, posters or stickers posting to you please get in touch. Please also let us know about any events you are organising so we can tell people about them.
We will also be publishing the results of our Ramsay Hunt syndrome survey and reporting on the lack of NHS services and care for people with facial palsy.
Patient Conference Survey
In 2015 we surveyed people about what they would like from a patient conference. We now have a team working on putting this together and we need up to date feedback. We would be grateful if you would complete this survey which should take about 6 minutes of your time.
UK patient survey:
Coventry University are undertaking a UK-wide survey to gather evidence on current treatment pathways for facial palsy patients and the place of facial exercise therapy. This is as part of the FRAME research study. If you are in the UK and would like to take part please click the link below:
Worldwide survey about Ramsay Hunt syndrome:
We will be closing our Ramsay Hunt syndrome survey shortly. If you have had Ramsay Hunt syndrome and haven’t completed it yet here is the link:
Great North Run 2018
We have five places in the Great North Run which takes place 9th September in Newcastle. If you know someone who is interested in taking part in this iconic event please send them to our website for more information and how to book places.
Support group news
Our Norwich Support Group held their first social event earlier this month. The Manchester group will also be holding a social event for their next meeting on 3rd February. They are meeting at The Moon Under Water pub in Deansgate. More details on our website.
Find support groups & networks locally
Thank you as always for your support.
<< Stuart's Story - The One Show 08 December 2017