Facial Palsy Awareness Week, Conference Survey and more

February 4, 2016

Welcome to our first newsletter of 2016. Christmas seems a long time ago as we are now preparing for the fast approaching Facial Palsy Awareness Week (1 – 7 March). The recent windy weather has not been kind to eyes that don’t blink so we hope people are not suffering! We will be sending another newsletter out shortly as we have a lot of other news to share. We are also seeking additional Trustees in 2016, details will be in a future newsletter so please look out for that.

Facial Palsy Awareness Week 1-7 March 2016

Throughout Facial Palsy Awareness Week we will be raising awareness of the many different causes of facial palsy on social media and hopefully in the media as well.

Promotional materials for Facial Palsy Awareness Week 2016 are now available to download via our online shop here. Alternatively we can send you any posters you want by post, just reply to this email if you have any questions.

If you are on Facebook you might like to sign up to our Event page for more news.

Lots of people are making plans at the moment and deciding what to do to raise awareness, we are keen to hear your ideas. We’re currently in discussions with a local school who are interested in promoting Facial Palsy Awareness Week; ideas that have been suggested are ‘Wear Purple for Facial Palsy UK on Dress Down Friday’, half make up/face paint and bake sales. Last year young Nicholas in the USA organised a ‘Crazy Hat Day’ which went down well.

Jo and Abbie are putting on a Quiz & Bingo night in Northampton on February 20th, just ahead of Awareness Week. There will also be a bucket collection at Northampton Town Football Club. Representatives from Facial Palsy UK will be attending the Quiz night. If you would like to come please reply to this email for further information. Tickets are £5.

As with many charities we are facing tough times at the moment, so any help fundraising during Awareness Week will make a big difference to the work we are able to do.

#FaceMyDay Campaign

Last year we created a real buzz with our #Facemyday campaign and many people are keen to repeat this. Get friends and family involved by wearing half makeup or half face paint, or ask them to grow half a beard. The point of the #Facemyday campaign is to start conversations about facial palsy and it’s a great way for family and friends to show their support.

#StraightFace Campaign – new for 2016

New for 2016, the aim of the #StraightFace campaign is to highlight what many people take for granted, the ability to laugh and to smile unreservedly without feeling self-conscious. Visit our website for activities to do in schools, the workplace and with friends.

Facial Palsy Awareness Week T-Shirts

Emily has been designing some special Facial Palsy Awareness Week t-shirts. We are using a company called Tboom for these, they produce them to order and send us a donation for every t-shirt sold. Click the links below to see the designs:

Adults t-shirts

Children’s t-shirts

A message from Karen Johnson, Deputy CEO

“As a child I used to hide my smile, because I was frightened of being bullied. There is only one picture of me from my childhood with an open mouth smile and I still struggle to ‘belly laugh’ in company. I don’t want children born with facial palsy today to be like I was – producing tight little smiles to try and hide their differences. I heard a Radio 4 programme a while ago. People were sharing their stories of growing up with problem teeth. They too shared the emotional anguish of going through their lives trying not to open mouth smile.

When I came up with the idea for the #StraightFace campaign I found it difficult to explain and I was worried people would misunderstand it. The suggested activities and games involve getting everyone to constrain their laughter, to think before they express happiness. The activities are deliberately fun and light-hearted though to make this very difficult to do. At our AGM in October I listened to Alex Barker, who has Moebius syndrome and is unable to show facial expression, make everyone laugh with his wonderful speech. Many people with facial palsy that I have met are very witty and deliver humour cleverly in deadpan style. We all have an amazing power to adapt to our circumstances as Kathleen Bogart’s research has shown. Many people rely on humour to get them through challenges in life, a good laugh can make you feel better in the most dire of situations. There is the saying ‘Laughter is the best medicine’, but sadly not when it makes you a target for bullies. My feelings are that the more people understand about facial palsy and the emotional implications the condition can have, then hopefully there will be less bullying, less ignorant comments and those affected will be encouraged to relax and laugh more. Alex is also keen to get comedians involved in trying to deliver jokes deadpan-style and make people laugh, not the easiest of feats unless you are Jack Dee or Alex Barker!

I’m very aware that children with facial palsy may not want to highlight their differences in school but the Facial Palsy UK team have tried to come up with fun activities which will make people really think about the impact of having a unique way of smiling, without making those with facial palsy feel singled out. I do know that my school life improved when I explained why my face was different to a bully one day, he was much kinder when he knew what facial palsy was. Talking to friends and family about how facial palsy affects me has changed my life. I only started being so open about my feelings when I reached my early thirties and realised other people were born with this condition. People sometimes say to me “Well it never used to bother you before so why do you talk about it now?” It has ALWAYS bothered me, I just felt it was pointless talking to anyone before, because how could they ever understand? Sharing my feelings and educating people about this condition has made living with it easier. We want this campaign to be a reminder that we all have different ways of smiling and no one should be afraid to smile.” Karen Johnson

Save the date: Facial Palsy UK AGM – 8 October 2016 (Peterborough – daytime)

Design A Christmas Card Competition

There’s still time to enter this competition, the closing date is 29th February. For more information visit our website here. We would love to see your designs!

A message from Lorraine – our Support & Information Worker

“I admit that I have been feeling a bit fidgety. I have been in the information and support role since September and spend most of my time here answering e-mails and phone queries. BUT I had never been to a support group meeting. So, on Saturday 23rd January I joined the Norwich group.

The surgeon who spoke about botox was engaging and took time to answer questions and give advice. My overwhelming feeling was that everyone in the group was valued. They are planning several fundraising and awareness events and were all keen to get involved, although there was no pressure to do this.

Everyone was really welcoming and from conversations that I have had, I know that this is how all of our support group leaders want the experience to be for a first-timer.

So, if you have never been to a support group because you might feel awkward, why not give it a try. If you decide that this is not your thing, you never have to go again. If you would like to take another adult with you for moral support, or to help them to understand your feelings they would be made welcome too.

There is a full list of the groups below and also under the ‘advice’ tab on the website.

There are groups meeting in two new locations on 12th March 2016 in Exeter & Leamington Spa (Midlands group). You may have to travel 50 miles to your nearest one but I think it will be worth it.” Lorraine Thurston

Please see below a list of our current support groups and details of those coming soon.

Adult support groups

Midlands – next meeting on 12 March 2016
Bristol – next meeting date to be confirmed (please email us to express interest)
Cornwall – next meeting on 23 April 2016
East Grinstead – next meeting to be confirmed
Edinburgh – next meeting on 21 May 2016
Exeter – first meeting on 12 March 2016
London – next meeting date to be confirmed
Manchester – next meeting date to be confirmed
Newcastle – next meeting 23 April 2016
Norwich – next meeting date to be confirmed

Thank you to all those who give up their time to run these groups and make them a success.

Running events

Brighton Marathon 17 April 2016

We have three places left in the Brighton Marathon but entrants must be signed up by the end of February so we are running out of time. If you do know someone who would like to run for us please could you point them to our website for details on how to sign up. We are not planning to buy places in 2017 due to lack of demand although people will still be able to buy their own places direct from the marathon organisers.

The Great North Run 11 September 2016

We have four places left in this years Great North Run, which is a very popular event. If you fancy taking part please visit our website for details how to sign up.

Conference Survey

We are applying for funding to put on a Facial Palsy Conference in April 2017. If you are a person with facial palsy or responsible for someone with facial palsy please could you complete our survey so we can identify your priorities:

Survey link

Thank you to those who have already completed the survey.

A request for help

Many charities have struggled in the past 12 months due to the reputation of the sector. When we launched in 2012 we believed that first and foremost we needed to work and show results in return for people’s support. We do not employ any of the practices that have been quite rightly heavily criticised in the press and therefore have no processes to amend in light of the expected fundraising regulations coming into force, which is good news. However, we are still struggling to manage the current workload and cover core costs. One thing that really helps us is small regular donations. Not everyone is in the position to do this, but if you would like to find out more please visit this link. We are extremely grateful to everyone who supports us, not only financially but by giving up their time as well. Thank you.

Until next time…

We have so much to do and are keenly aware that we need to make headway in ensuring people have access to facial palsy health services around the country. We also need to provide better information for those newly diagnosed. We will be renewing our Strategic Plan and Business Plan shortly which will include all of our new targets. Thank you as always for your support. If you would like to contact us about anything in this newsletter please email info@facialpalsy.org.uk or call us on 0300 030 9333. Thank you again for all your support.

News Categories: Events  / Facial Palsy Awareness Week  / General news  / Support groups  /    ||    Tags: facial palsy  / facial palsy awareness week  /