Awareness Week, Comedy Event, Family Day, Research and more

February 15, 2020

Welcome to our general newsletter

A very warm welcome to all of 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.

We were joined in January by Leanne Armstrong who is our new part-time Information Coordinator bringing our office team back to two!

Facial Palsy Awareness Week 1 – 7 March 2020

We are launching Facial Palsy Awareness Week with our Face UP! to Comedy event at Lingfield Park Resort in Lingfield, Surrey on Saturday 29 February. The fun kicks off at 7:30pm and finishes at midnight.

Performing alongside three fantastic acts whose talents include impressions, magic and comedy, will be our very own Alex Barker who bills himself as the comic who does not smile. A three-course dinner is included in the ticket price of £50. You will be in the company of people with facial palsy, researchers, health professionals specialising in the condition and supporters of the charity. There are more details on our website here or for the direct booking link click here. As we are now just two weeks away from the event we will be sending food choices over to the venue within the next few days so if you are planning to join us please buy your tickets as soon as possible. Thank you! All funds raised will support our work. This is our first large fundraising event and we very much appreciate the support we have been given by volunteers in putting this together.

During Facial Palsy Awareness Week – how can you help?

From 1 – 7 March we will be raising as much awareness as we can but we do need your help. Here are some ways to get involved.

Face UP! and Speak out
Give a talk about facial palsy to someone new, e.g. your local doctors surgery, your school, your workplace or on social media.

Hold a Face UP! Bake Sale
Share facts about facial palsy alongside your bakes. We have created posters, a checklist, allergen signs and name cards for your bakes. Don’t have enough people willing to help with bakes? Why not hold a Krispy Kreme fundraiser?
Link to more information about planning a Face UP! Bake Sale

Every penny counts
Can you make a small regular donation to Facial Palsy UK? Donation link

Take leaflets into your local A&E
Email Leanne for more details via info@facialpalsy.org.uk.

Put up posters
Emotional consequences of facial palsy
Social consequences of facial palsy

Take the social media challenge: Lift the lid on facial palsy
There are many misconceptions about facial palsy which unfortunately lead to inadequate health care and lack of support generally for those affected. How many facts can you share during the week about how our faces work and/or how facial palsy affects you? Help us encourage NHS funders and decision makers to FaceUP! to the difficulties people with facial palsy have accessing health care for a medical condition. Share your stories and experiences. Use the hashtags #FaceUP and #FaceTruths during Facial Palsy Awareness Week.

Themes we are keen to raise awareness about and hear your thoughts on:

• The difficulties people have accessing help via the NHS.
• How you cope with unexpected comments from others who are less informed about facial palsy.
• Your stories and anything that is important to you regarding raising awareness.

Examples of information you could share during awareness week

Accessing NHS healthcare infographic
Amazing Face infographic
Botox infographic
Chloe’s Day Animation
Experience of Parents & Carers accessing NHS healthcare for a child with facial palsy infographic
Eye infographic
Face Facts infographic
Ramsay Hunt syndrome infographic
Understanding Facial Palsy video
• Ramsay Hunt syndrome mnemonic (see below)

Facebook RHS Mnemonic

Please keep an eye on our social media accounts and retweet/share as much as you can.

Northern Family Day – save the date

Our family days are for children with facial palsy, their parents and carers.
Our next Family Day will be on Saturday 11 July at Eureka! in Halifax, West Yorkshire. Full details will added to our website after Awareness Week. To register your interest please contact Leanne on info@facialpalsy.org.uk.

Cheshire & Mersey Support Group video

A huge thank you to the Cheshire & Mersey Support Group for creating this video which shows what you can expect from one of Facial Palsy UK’s support groups.

Annual Report

Our Annual Report for the year ending 30 June 2019 is now available to download from our website.

Download link.

Research

The Oxford Facial Palsy Service

The Oxford Facial Palsy Service thank the 154 people who have already been in touch asking to take part in this study which has been running since last year. They are are still looking for at least 50 more people to take part, so your involvement would be much appreciated!

The Oxford Facial Palsy Service has developed a series of self-help guides to help people with facial palsy, and their friends and family, to cope with the psychological impact of facial palsy.

The Oxford Facial Palsy Service is currently running a research study looking at the effectiveness of these guides.

If you have a diagnosis of facial palsy and you or a friend or relative would be interested in taking part in some research into the effectiveness of these guides, then please email matthew.hotton@nhs.net or contact by phone on 01865 234714 for further information about the study.

Emteq

Emteq are developing a device which will help people do their facial exercises and are seeking volunteers to help with their research. Find out more.

Great North Run

We are seeking participants for the fabulous Great North Run, we have three places available. Please share our link with running friends who may be interested. Places are £30 each and there is a pledge to raise £300 in sponsorship. Booking link.

Thank you

With staff changes over the past couple of months our workload has increased. Thank you for your continued support through this time of transition. Thank you also for any support you can give us during Facial Palsy Awareness Week. To receive updates by email please join our community.

The Facial Palsy UK team

News Categories: Events  / Facial Palsy Awareness Week  / Family Days  / Fundraising news  / General news  / Research  / Support groups  /    ||    Tags: awareness week  /