Summer Newsletter

August 14, 2019

Welcome to our Summer Newsletter

A 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.

Important reminder about the Petition – UK only

Our petition deadline date is 1 September. We are still trying to reach 10,000 signatures on our petition in order to get a response from Parliament. We are currently at 6,803. Please help by asking work colleagues to sign it as well as friends and family. We have gained 300 signatures in 24 hours by pushing on social media so this target is reachable with your help! Here is the link to share:

Link to the petition

Support

Our support helpline is open Mondays, Wednesdays and Fridays. If you have any questions about facial palsy we are here to help you. You can either call us on 0300 030 9333 or email support@facialpalsy.org.uk. Another email will go out to those specifically interested in support groups with details of forthcoming dates.

Strategic Plan

We have been working on our strategic plan for the next three years and will shortly be publishing the updated document on our website. This will detail the charity’s priorities and what we plan to achieve going forward.

Fundraising

Thank you to everyone who has been fundraising for us.

Pictured are Deborah Moreland, friends and family from Northern Ireland who recently completed a sponsored walk raising £1,760 plus gift aid.

We are pleased to say that we have now distributed leaflets to all of the GP surgeries in Northern Ireland and are also supporting the training of a specialist facial therapist there.

Anya Jones has also recently completed a Ben Nevis climb. This was two years after having surgery to remove an acoustic neuroma which is an amazing achievement. You can read more about Anya’s story here.

A big thank you to everyone who has supported us!

Events

We held a family day at the end of June at the National Space Centre in Leicester (pictured). We also had an information stand at the Moebius Research Trust Conference earlier this month. Thank you to all of our volunteers who gave up their time to support these events.

Research

If you have a diagnosis of facial palsy, you may be interested in a research opportunity. The Oxford Facial Palsy Service has developed a series of resources to help people with facial palsy, and their friends and family, to cope with the psychological impact of facial palsy.

The guides focus on topics including: coping with the early stages of facial palsy; improving confidence; reducing anxiety; explaining facial palsy to other people; managing mood and communicating with confidence. The Oxford Facial Palsy Service have also developed a stand-alone guide for friends or relatives of people with facial palsy, which introduces ways for friends or relatives to look after themselves and gives tips for how they can best support their friend or relative.

The Oxford Facial Palsy Service is interested in how effective these guides are at helping people with facial palsy, as well as their friends or relatives. They are looking for English-speaking men or women over 18 years who have a diagnosis of facial palsy, or are a friend or relative of someone with facial palsy. You will be asked some questions about the impact of facial palsy, to check your eligibility for this study.

If you are eligible to take part you will be given a self-help resource to use over a 4-6 week period. We will also ask you some questions about yourself before and after this 4-6 week period.

If you are interested to take part or would be keen for a friend or relative to take part and would like more information, please contact Dr Matthew Hotton in the Oxford Facial Palsy Service, on matthew.hotton@nhs.net.

What’s next?

We are currently planning Awareness Week 2020 and also working on a dedicated Health Professionals’ website.

Thank you as always for your support, whether it be by volunteering, raising awareness, making donations or fundraising. We couldn’t do the work we do without you.

The Facial Palsy UK team

News Categories: General news  /