May Newsletter 2015

June 8, 2015

Hello and welcome to our May newsletter! It has been a successful year so far and we would like to thank you for your continued support. We had our first global Facial Palsy Awareness Week in March and as a result, raised over £13,000 which we will make sure we put to good use. We still have lots of events coming up but if there is anything we haven’t covered in this newsletter please do get in touch.

Facial Palsy Children’s Book Project

Facial Palsy UK has the chance to win £5,000 in a competition organised by The Aviva Community Fund. We would use the money to create two different illustrated story books to support children affected by facial palsy.

One book will feature a positive character with facial palsy, aimed at supporting children and their siblings, which can also be shared in schools to educate teachers. The second book will be about the child of an adult with facial palsy.

We know that the children who cope well are the ones more informed about facial palsy. Our books will equip children with the tools they need to feel confident about explaining facial palsy and reinforce that special smiles are beautiful and should not be hidden away.

To stand a chance of winning we need your help!

We need to secure enough votes from friends, family and supporters to be entered into the Finals, where a judging panel will award the funds.

Please visit our project page and vote for us, the deadline for voting is 30 May! You need to register with an email address or log in with your Facebook account. At the moment we are a few votes behind so we need as many of you to vote as possible. Please consider asking friends and work colleagues to do the same.

Our YouTube video highlights the importance of this project.

We appreciate the support from Oakwood Insurance Consultants who submitted our project page on the Aviva website.

Thank you!

As of 11 May we now have office space! This was a much needed move as we were quite literally running out of space. Our office is based at Eventus in Market Deeping, near Peterborough. We are just on the southern border of Lincolnshire.

Support

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

Adult support groups

• Midlands – next meeting planned Autumn 2015, date to be confirmed.
• Bristol – next meeting 20 June 2015
• Cardiff – currently on hold
• Cornwall – next meeting on 25 July 2015
• East Grinstead – next meeting 30 May 2015
• Edinburgh – next meeting tomorrow 23 May 2015 (physiotherapy talk taking place)
• London – proposed launch date 12 September 2015, venue to be confirmed
• Manchester – next meeting date to be confirmed
• Newcastle – next meeting 10 October 2015
• Norwich – next meeting 13 June 2015
• South Yorkshire – currently on hold

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

Future plans

We are currently discussing how we can improve support to adults, children and families. Please look out for invitations to surveys in future newsletters or on Social Media to have your say.

Our next Facial Palsy UK Family Day is on Saturday 27 June at Whitehouse Farm Centre which is just north of Newcastle. Children with facial palsy, their siblings and parents will enjoy a fun-filled day. For more details please visit our website.

Bristol Fundraising Event – Face The Music

Bethan Robertson-Smith, one of our volunteers, is holding a night of musical entertainment at the new PRSC building in Bristol, between Jamaica and Hillgrove St. on the 20th of June, starting at 19:30. Tickets are £5 on the door.

There will be music from The Inexplicables, DJ Sammystring and Dr Funkenstein and a raffle will be held on the night.

In the afternoon Bethan will be putting on an awareness gallery (free entry) with photographs and videos. She has also told us that there will be free cake during the afternoon!

Check out Bethan’s Facebook page for more details.

Facial Palsy Awareness Week

This year we launched our first ever Facial Palsy Awareness Week which took place during the first week of March. People from all over the world got in touch with us to share their stories about how facial palsy affects their lives. So many of you also chose to take part in spreading awareness and raising money for us. The idea for an Awareness Week came from volunteer Kay Turner and we’re sure you will agree it was a huge success.

Here are just some of the things that took place during Awareness Week:

Cheryl Shepherd and the team at Barclays Wealth in Glasgow kicked off the week early with a charity bake sale, raffle, Pakora event and face painting in the office. They also took part in a sponsored walk in Kelvingrove Park.

Peterborough Central Library agreed to have a display with Awareness Week information for people to view over the whole week.

Emily Blumsum dyed half her hair purple and organised a bake sale at school to raise awareness and funds for Facial Palsy UK.

Abbie, a season ticket holder for Northampton Town Football Club (The Cobblers), enlisted the help of the team in raising awareness and was also in the match programme.
Abbie is working hard to raise awareness of what it is like to live with bilateral facial palsy. She has been busy selling wristbands and had a bake sale at her school. Read about Abbie’s fundraising here.

Claire’s Card

During the week, we launched ‘Claire’s card’. The need for this card became apparent when Claire, the young woman the card is named after, was thrown out of a nightclub because security staff had not seen facial palsy before and thought she was drunk. They did not understand how facial palsy can affect speech and someone’s appearance.

Sadly this was not the first time we’d heard a story like this.

The card is essentially a small information card about facial palsy and the different ways it can affect a person. It is credit card size and printed on lightweight card. We hope that people will be able to show the card without having to justify why they look or speak a certain way. It can also be used to raise awareness.

More details about how you can order a card can be found on our website.

Social Media

One of our volunteers suggested raising awareness throughout the week by writing a little each day in their Facebook status about how the condition affects them personally.

Atima Bhatnagar, along with other keen nail artists and technicians, created lots of beautiful nail art to mark Facial Palsy Awareness Week on Instagram. Atima’s nail art helped her gain back some of the confidence she lost when first diagnosed with facial palsy. You can read Atima’s story on our website.

#facemyday Selfies

We asked you for your half make-up and half beard selfies to draw attention to unique facial appearances and encourage people to stop and think about facial palsy.

The first person we know of to #facemyday was Adam Peters from Australia who shaved off half his beard to support his son.

The team at Newcastle RVI took part in the half beard and half make-up challenge.

Queen Victoria Hospital got involved too.

Charity founders Charles Nduka and Vanessa Venables (centre) with Medical Advisory Board member Catriona Neville (right) .

Caroline Archer who is the face of Liz Earle cosmetics, also took part in #facemyday, as did surgeon Raman Malhotra and our support coordinator, Dr Karan Arora.

We also received videos from Welsh DJ SammyString who shaved half his beard and Danny who shaved off half his hair!

In the USA, Heidi Moss organised an #AboutFace campaign where people wore half moustaches during awareness week.

Your Stories

In order to promote Facial Palsy Awareness Week we asked you to share your stories in the press, on television or radio.

Selma Abbey and Dominic Bray discussed Facial Palsy Awareness Week on BBC Breakfast. (Dominic’s sons also made cakes for their school.)

Sara Bragg took part in a BBC Sussex Radio interview, raising awareness of facial palsy. Sara also completed a Dawn walk and raised funds for Facial Palsy UK.

Anna Goldthorp talked about her experience of Bell’s palsy. You can read her full story on the Mail Online and the Mirror website.

Thank you to Lucy and Laura who shared their experience with Bell’s palsy with us during awareness week.

You can read Laura’s blog here.

Visit Lucy’s blog to read her story and to see the #Facemyday selfies posted by her family and friends in support of awareness week.

To finish the week, Kay Turner and friends organised a music concert at the Heritage Church in Preston and Amanda Duncan took part in a 6 hour sponsored rowing challenge, at the Palatine Leisure Centre in Blackpool.

A young lady called Lettie Brown wrote a song especially for Facial Palsy UK called Smiling through your eyes after hearing about the effects of the condition from Kay who has had Bell’s palsy twice. She also suggested they should put on the concert to raise awareness. Kay wrote some poems for the event and they were supported by many local people in Preston.

You can read Amanda’s story on The Blackpool Gazette and the Lancashire Telegraph website. Amanda is pictured below.

Thank you also to Stephen Paton, Lydia Pinfold, Rebecca Corden, Alan Bancroft, Shawn Sykes, Petra Dunne, Jo Callaghan and Rainy Watson for fundraising during Awareness Week. So many people got involved in one way or another, and we thank you all.

In the media

We’d like to thank everyone who has shared their stories with us and the media so far. We still have lots to do to raise awareness of facial palsy. Hearing from people who have had experience with facial paralysis can make a huge difference to the public’s perception of the condition.

Belinda Peters wrote about her son, who was born with Facial Palsy. Read more here.

Amelia Tearle, who recovered from facial palsy two years ago, describes the impact that the condition had on her life. Read more here.

Alison Sweeting, talks to London Live about raising awareness.

Nicholas Grant, aged 8, was born with facial paralysis and talks about his experience before and after surgery. Find out more here. Nicholas also raised funds during Facial Palsy Awareness Week.

Jayella King, a dance student who was bullied because of her facial palsy, talks about her future after having surgery. Read Jayella’s story here.

We’d like to thank the people who make donations, large or small.  All of the support we receive is very much appreciated, it makes a real difference to what we can achieve.

Running events

Brighton Marathon 12 April 2015

We had 8 runners in the Brighton Marathon this year. A big thank you to Antony Curtis, James Donnelly, Kyle Frost, Vicki Gow, Louisa Miles, Mark Swatman, Chris Sword and also Nick Bolding who ran the marathon with half of his beard shaved off! Not only did our runners put many hours into training but they each raised an amazing amount of money.

London Marathon 26 April 2015

Well done to Andrew Abbey for completing the London Marathon last month. We appreciate all the hard work you put in and the amazing support you and Selma have given the charity again this year!

Thanks again to our volunteers who look after our runners during marathon events and for supporting us!

Bath Run or Dye 2015

A huge thank you to Bryony Payne who took part in Bath Run or Dye, 5k run and to Bethan for helping with organisation and fundraising.

2015 Great Midlands Fun Run

Thank you and good luck to Rachel-Marie who is taking part in this event on 31 May!

The Great North Run 13 September 2015

We may have a couple of extra spaces in the Great North Run, please let us know by Monday 25th May if you are interested in a place. Also if you are in the Newcastle area on the 13th of September, our runners would appreciate your support.

New personal stories on our website

Personal stories are always popular with visitors to our website and help our readers affected by facial palsy feel less alone.

Jacquie describes her experiences after being diagnosed with Bell’s palsy eleven and a half years ago.

Gilly recovered from Bell’s palsy, she shared her story with us to give hope to those newly diagnosed.

Thank you to everyone for sharing your experiences with us.

Our AGM 2015

This year’s AGM will be held on Saturday 17 October in the daytime at the same venue as last year, The Tabernacle, London.

We are looking for a top prize for our Grand Prize Draw which is always drawn at the AGM. We have two top prizes already (a one night stay in the Hilton Mayfair and a DFDS Ferry crossing). If you can help with a third prize please do get in touch.

New on the website, Rebecca’s patient experience about a mid face lift.

Finally we sent an information leaflet and poster about facial palsy to approximately 97% of GPs in the UK during March to raise awareness of the needs of patients. We are looking for volunteers who would be willing to take leaflets and posters into local hospitals in the UK. If you are interested in doing this please get in touch.

Well that concludes our news for this time, thank you again for your continued support.