Facial Palsy UK Summer 2014 Newsletter

July 7, 2014

Welcome to our Summer Newsletter

June marked the end of our second year as a charity and thanks to all the efforts of our fantastic supporters we have some really good news to share! In our third year we are set to make some of our biggest achievements to date so please read on to find out more…

Support Services Project – funding received!

We are delighted to announce that we recently received an offer of funding to recruit two part-time support coordinators over a one-year period. We will shortly be appointing two health professionals to help set up more local adult support groups and also provide outreach support to those who need it.

We now need to establish priorities for where the local support groups are most needed. If you are interested in attending a Facial Palsy UK local support group we would be very grateful if you could complete our survey indicating your preferred location. Please click this link to access the survey.

Thank you to everyone who has completed questionnaires and submitted supportive quotes which have all helped us to secure this funding.

A personal message from our founder Charles Nduka

Currently there are no nationally funded trials investigating treatments or cures for facial palsy. This leads to uncertainty with regards to best practice and treatments.  Despite recognition that conditions such as facial palsy are neglected in terms of research funding, this situation is unlikely to change.

In order for the right trials to be funded, we need to understand what questions patients, carers and health professionals think are the priorities to answer.

Facial Palsy UK is looking to raise £20,000 in order to push facial palsy research onto the research funding agenda.  This money will fund a Priority Setting Partnership in association with the James Lind Alliance (http://www.jla.nihr.ac.uk) and would see a list of priorities published for researchers looking into the causes, treatment, prevention and consequences of facial palsy.

Why we must act now

Some of the current treatments of facial palsy are at risk for withdrawal of funding due to the lack of large scale studies to support their use.

Already Facial Palsy UK has been contacted by patients who have had difficulty in being referred for treatment. Please consider making a donation however small to support this important cause. You can find out more information about this appeal on our website here.

To donate now you can do so via JustGiving or the Charities Aid Foundation.  Alternatively scan the image with a QR reader to make a £3 text donation to this appeal. To donate via any other method please visit our website.

Thank you.

Sue’s Monkey Business

We’d like to say thank you to Sue’s Monkey Business for supporting Facial Palsy UK. Sue’s sock moneys are lovingly handmade and carry the CE mark, making them suitable from birth upwards. These very special sock monkeys have been a hit with young and old due to their special and unique smiles. Prices are £12 + £3.50 p&p (within the UK, overseas shipping available on request), payment is via bank transfer or PayPal. They can be personalised with badges and messages for an additional charge.  For every sock monkey sold Sue is donating £1 to Facial Palsy UK. You can find Sue’s Monkey Business on Facebook or contact Sue direct on suesmonkeybusiness@hotmail.co.uk.

In the media

We’d like to thank all of our media volunteers who have been helping us raise awareness of facial palsy over the past few months, hearing individuals tell their story really does make a difference to the public’s perception of the condition.

• Fran Davies, 20, from Liverpool, shared her Bell’s palsy story with Pick Me Up! magazine in April.
• Channel 5 newsreader Natalie Verney wanted to raise awareness of Bell’s palsy in pregnancy after being struck by the condition just before the birth of her twins, she shared her story with the Daily Mail.
• The Guardian wanted to do a feature on facial palsy in May and spoke to Marvin Grubb, Kelly Lynskey and Emma Barrett about Bell’s palsy, congenital facial palsy and facial palsy after acoustic neuroma.
• Maria Munir has been working with the Fixers Charity, Fixers are young people using their past to fix the future.  Maria was born with facial palsy and is currently planning a poster campaign in the York area to change public perceptions of facial palsy and raise awareness. Maria’s Fixers interview was broadcast on ITV News Calendar and ITV News Tyne Tees in June. See the interview on YouTube here, it also features interviews with Facial Palsy UK Trustee Vanessa Venables and Amelia Tearle, who has experienced Bell’s palsy.

Bell’s palsy survey results

Thank you to everyone who completed our Bell’s palsy survey, 384 people took part. We created two reports detailing the results and conclusions, please visit our website to download the reports in full:

https://facialpalsy.org.uk/research/surveys/survey-results/499

Why are surveys important?

Surveys are just one way for people affected by facial palsy to have their say, to feed back any ways in which the condition affects them. This vital information helps us demonstrate the need for support to funders and helps us prioritise our work. Thank you for taking the time to complete this survey, your views make all the difference.

Fundraising activities and donations

In April a team of eleven runners took part in the Brighton Marathon to raise funds for Facial Palsy UK. Runner Ollie Scott even travelled all the way down from Glasgow to take part! We are very grateful to everyone who put in so much effort with training, fundraising and taking part on the day, thank you! The runners raised £6,963 between them.  Amazing!

Read Vanessa Venables’ account of the day here.

If you are interested in taking part in the Brighton Marathon next year, we are now taking registrations. There is an early bird price of £40 per place until the end of October 2014, places are issued on a first come, first served basis. Please click the link below to register for a 2015 place:

Register for a place on the Facial Palsy UK team – Brighton Marathon 2015

So what else has been happening?

We want to extend a big thank you to all our fundraisers:

• Denise Mulvaney managed to get a place in the Virgin London Marathon 2014 and she very kindly agreed to run and raise funds for Facial Palsy UK.
• Brian Marcus ran the Jerusalem half marathon.
• Lou Miles took part in the London to Brighton 100km cycle ride on 15 June.
• Lorraine Kellow and Jan Clark took part in the Westminster Mile in May.
• Sean Montgomery and six friends took part in Tough Mudder Scotland, also in June. Please visit their JustGiving page to see all the fun pictures of this challenge.
• Deborah Dawes, a friend of the Manchester Support Group, is taking part in the Leeds 10km in July, please visit Deborah’s JustGiving page to find out more about why she is raising funds for Facial Palsy UK.
• Bethan Robertson-Smith and her team of nine runners are busy training for the Bath Running Festival in July.

Every person that fundraises for us is not only raising money but also showing they support the work of the charity and this makes a real difference. Thank you to each and every one of you who supports the work of Facial Palsy UK, we really do appreciate it! We are getting more and more phone calls from people affected by facial palsy and we are only here to answer these calls because you make this possible, so thank you!

School based fundraising

Kay Turner not only inspired Deborah Dawes to run the Leeds 10k for Facial Palsy UK, but she is also busy fundraising and is shortly going to have a stall at Haslingden High School’s Charity Day. Getting schools involved is a fantastic way to raise awareness and to make young people more empathetic about facial differences. To make the day more fun and memorable, Kay is cutting smiles out of photos of some of the teachers and asking pupils to guess which smile belongs to which face. Three pupils will be running the stall for her and they will also be selling trolley token keyrings and wrist bands to raise funds. Thank you Kay and to her team for all your efforts!

Schools often think about which charities to support over the school year in September so if you can, please do consider putting Facial Palsy UK forward.

We’d also like to thank the people who make donations, large or small.  All of the support we receive is very much appreciated. A large gift was made to the charity recently which means we can now plan two Family Days, one in the north and one in the south of the UK.  If you haven’t already done so, please complete the Family Day Survey. More details about the events will follow shortly.

Online shop

Thank you also to Lydia Pinfold, Lydia is a photography student who recently helped us by taking photographs of items we are selling such as wristbands and trolley coin keyrings to feature on our website.

We plan to sell Facial Palsy UK t-shirts and running vests in the near future as well.

Visit our online shop

Scotland news

Before we could apply for charity status in Scotland we needed approval from the English Charity Commission. We have now received this approval and are able to make our application to the Scottish charity regulator, we expect this to take no longer than three months to go through.

We also have ten charity places available in the Great Scottish Run (half marathon) which can be purchased direct from us for £20, all we ask is that you agree to raise a minimum £195 in sponsorship for Facial Palsy UK. We will send you a running vest, training tips and will be there to cheer you on on the day.

For more information please contact us or click the button below to sign up now!

If you have any ideas about how you would like to see the charity promoted in Scotland and any ideas for how to launch with a splash, please get in touch!

Moebius Syndrome and Facial Palsy Conference

The Moebius Research Trust will be hosting the first Moebius Syndrome and Facial Palsy Conference in the UK this coming autumn. The conference is open to anyone who has been affected by either condition and will provide individuals with the opportunity to engage with experts and other families in order to learn from one another as well as build a network of contacts for the future.

For more information please visit the Moebius Research Trust website.

New information on our website

• Facial Reanimation by the Labbé technique (Lengthening Temporalis Myoplasty)

Thank you to the health professionals who have given up their time to help with content for our website.

Medical Advisory Board

We’d like to welcome Miss Philippa Moth, Locum Consultant Obstetrician and Gynaecologist, who recently joined Facial Palsy UK’s Medical Advisory Board. Philippa trained at The Royal Free Hospital School of Medicine. She completed specialist training in Obstetrics and Gynaecology with a specialist interest in minimal-access surgery. She has recently been appointed as a Locum Consultant at Maidstone and Tunbridge Wells NHS Trust looking after patients with complicated pregnancies and benign gynaecological conditions.

Philippa has firsthand experience of the physical and psychological challenges of facial palsy, having suffered a Bell’s palsy in pregnancy.

New personal stories on our website

Personal stories are always very popular with visitors to our website.  People often take great comfort from reading other people’s experiences.

• Roger struggled to access the support and treatment he needed when he was recovering from Bell’s palsy, he shares his story here.
• Emma was diagnosed with an acoustic neuroma as a teenager and left unable to smile when it was eventually removed. More than ten years later Emma is smiling again after successful surgery. Read Emma’s story here.
• John was beginning to give up hope of ever recovering from Bell’s palsy but then things suddenly improved nine or ten weeks later, he shares his story here.

Thank you to everyone for sharing your experiences with our readers.  Reading people’s stories really helps others affected by the condition, even if only to make them feel not quite so alone.

FACIAL PALSY UK AGM – SAVE THE DATE!

Our next AGM is planned for Saturday 22 November, exact times to be confirmed but likely to be 1-3pm in London. More details coming soon!

Brandenburg Choral Festival

Facial Palsy UK is also partnering with the 2014 Brandenburg Choral Festival and will be selling tickets to one of their events. Our selected event is as follows:

Tuesday 14 October, 7.30pm

Hinde Street Methodist Church

Fauré Requiem

Purcell Music for the Funeral of Queen Mary

Handel My Heart is Inditing

Bach Lobet den Herrn

Brandenburg Singers

Robert Porter – Conductor

Tickets £18 (unreserved) children £5

For every ticket we sell, the charity will be able to retain 50% of the ticket price.  We have 50 tickets to sell in total which is a possible total income of £450 for the charity so please do share this newsletter with any friends who you think may be interested.

For more information about the event please visit the Brandenburg website. If you are interested in tickets please contact us either by telephone to 0300 030 9333 or email us on info@facialpalsy.org.uk.

That concludes our news for this time. Thank you again for all your support over the past two years!

OTHER WAYS TO HELP

• Volunteering – Volunteers help us in different ways, they help with events, raise awareness, provide admin support and more. There will be lots of opportunities once we are more established.  Register your interest here or see our current volunteering opportunities
• Do you shop online? – Please consider signing up for Give as you Live and supporting Facial Palsy UK, it won’t cost you a penny extra! We currently have 56 supporters who have so far raised £350.20 between them!
• Set up a direct debit – Small regular donations can make a real difference and will help us grow the charity.  If you are interested in supporting Facial Palsy UK in this way, you can set up a direct debit here. Thank you!