Christmas Newsletter 2014

December 23, 2014

Hello and welcome to our Christmas newsletter! First of all we want to say a big thank you for your continuing support of Facial Palsy UK. It’s been a very hectic first two years but we have achieved so much and we could not have done this without all of you. We have lots of news to share and we know many people have been eagerly awaiting information about our recent AGM. If we haven’t covered all your questions in this newsletter please do get in touch.

Support Services Project

In the autumn we recruited two support coordinators who are each working one day per week providing outreach support and also making plans to set up new adult support groups around the country. Helen Kelleher is our Support Coordinator for the north of the country and Scotland, Helen set up the Newcastle Support Group a couple of years ago on a voluntary basis and is very committed to supporting people affected by facial palsy. Dr Karan Arora is also very keen to improve services and support in this area, he is responsible for the south of the country and Wales. If you would like a support group in your area or would like to help set one up, please do get in touch.

Adult support groups

• Birmingham – first meeting planned for 24 January 2015
• Bristol – next meeting 7 March (extended meeting, see website for details)
• Cardiff – launching soon, dates and venue unconfirmed at time of writing
• Cornwall – first meeting on 17 January 2015
• East Grinstead – next meeting 21 February 2015
• Edinburgh – first meeting planned for 24 January 2015
• London – launching soon, dates and venue unconfirmed at time of writing
• Manchester – next meeting 24 January 2015
• Newcastle – next meeting 25 April 2015
• Norwich – this group launched in November and will meet again on 14 February.
• Sheffield – first meeting planned for 28 March 2015 (we are still finalising venue).
• York – first meeting planned for 7 February 2015 (we are still finalising venue, date may be subject to change).

If you are considering attending one of our new support groups in the future please do try to go along to the first meetings. If we get insufficient numbers they may not be sustainable.

Support for children and families
We are putting together family days for children affected by facial palsy, their parental guardians and siblings. However, we appreciate that some families would benefit from more regular support and the opportunity to connect with others locally. We don’t recommend families attend our adult support groups because some of the discussion content may be unsuitable for children. We do welcome your input as to how to create better opportunities for families to connect, so please get in touch with your ideas.

Facial Palsy UK Family Day

Our first Facial Palsy UK Family Day took place on 13 September. Children with facial palsy, their siblings and parents enjoyed a fun-filled day at Knockhatch Adventure Park in Sussex. We received lots of positive feedback from the families who attended but also have some ideas how we can improve the next event. We are still in the planning stages for the next family day but it will be held in the north of the UK. More details to follow in the New Year. If you want to be contacted when we arrange our next family day please let us know.

Facial Palsy UK AGM

Facial Palsy UK celebrated its second birthday in London on 22 November 2014, with guest speakers and several special announcements.

Review of the Year 2013/14 – Charles Nduka

The charity’s founder, Charles Nduka, reviewed the progress made in the last year by the charity, including Facial Palsy UK gaining charity status in Scotland back in September. Key successes for the year included the number of people we supported: 390 direct support enquiries, 72,500 unique website visitors, 345 Twitter followers, 688 Facebook ‘Likes’ and four established Adult Support Groups. Facial Palsy UK also received funding for an Awareness Campaign and Support Services Project.

A special thanks was also announced to every single person and organisation that has supported Facial Palsy UK this year, with individual fundraisers raising in excess of £26,000, doubling last year’s total! The importance of the roles of Volunteers was highlighted and how they are integral to the success of the charity.

Financial Review 2013/2014 – Charles Nduka

The financial health of the charity was reviewed: initial start-up costs of £20,000 were funded by Mr Nduka, these are not required to be repaid. Unrestricted income from donations and fundraising increased by 80% in the charity’s second year to £46,733 (2013: £25,896). Expenditure increased by just 1.3% to £41,990 (2013: £41,436). Principal funding sources were individual fundraisers (£26k), Trusts (£8.5k) and Major donors (£5k). It’s vitally important that we increase our regular income such as direct debits and Give as you Earn to ensure the sustainability of the charity.

Next year’s budgeted expenditure on core costs is £49,000. It was also mentioned that securing office space would enable us to utilise volunteer help more effectively, the charity is currently home based. We should ideally have reserves between £12,250 and £24,500 to cover 3-6 months expenditure, we do not currently hold reserves. We also need to seek a permanent part-time CEO who can really help to propel the charity forward.

Future plans include:

• Ensuring greater access to treatment in this time of increased financial pressures
• Further work on awareness and a national competition
• Children’s book
• Family days 2/3 times per year
• Improved support: outreach, workshops and more local groups
• Training of therapists, and literature for health professionals

The role of the Medical Advisory Board was explained which includes identifying treatment needs and endeavouring to improve services for patients, training for health professionals and more. Sarah Healey was announced as being the Patient Representative who sits on the Research Panel.

Another topic for discussion was Facial Palsy UK’s Research Appeal. Currently there are no nationally funded trials investigating treatments or cures for facial palsy, which leads to uncertainty with regards to the best practice and treatments. Despite recognition that conditions such as facial palsy are neglected in terms of research funding, there is little sign of this changing. £20,000 will push facial palsy research onto the funding research agenda. Since the AGM we can announce that £3,170 has now been raised for this appeal.

The full PowerPoint presentation is available to download in pdf format here.

Formal minutes from the AGM are available here.

Accounts and Annual Report for the year 1 July 2013 – 30 June 2014 are available here.

Protecting the Eye – Raman Malhotra

Raman Malhotra, a consultant ophthalmic and oculoplastic surgeon, presented his research and tips for protecting the eye as well as highlighting the importance of taking care of your eyes. For someone with facial palsy, how you treat and take care of your eyes can be an ultimate game changer in terms of getting a positive outcome. The presentation offered advice on how to take care of your eyes including ensuring there are humidifiers in every room, taping the eye, using lubricants and also wearing glasses with visors or wraparounds in order to prevent dry eye. It was stated that if drops are needed more than four times per day then they should be PRESERVATIVE-FREE drops because preservatives used in large quantities or over a prolonged period of time may damage the delicate cells on the surface of the eye or cause inflammation. Mr Malhotra also shared his work on surgical techniques that can be used to improve blink and eyelid closure. Currently people are able to have surgery to insert gold weights or platinum chains under the eyelid to help closure, however problems can arise with poorly placed or bulky weights. Mr Malhotra has now developed platinum segments, which are becoming more popular due to their adjustability. The full PowerPoint presentation is available to download in pdf format here.

Personal Experience – Patricia Lintott

Patricia Lintott has facial palsy due to cancer, she described a distressing experience that happened to her recently. A man jumped out at guests as they arrived at a fairly prestigious event, he was wearing a mask which resembled someone with a facial disfigurement. Patricia made a joke of it but did feel unsettled by what happened. She decided to speak to the theatre company and the jewellers who organised the event just to explain how this had made her feel. They were very understanding and have withdrawn this particular mask from use and the jewellery company have offered to design a piece of jewellery for the charity and help with promotion in the north of England. On hearing about Patricia’s concerns about the mask, the theatre company also offered to help us with free events and promotional work. Patricia wanted to share her story because she felt that by not reacting angrily she had raised more awareness and garnered understanding and support from the companies involved rather than creating confrontation.

Support Services Team Talk – Helen Kelleher & Karan Arora

Helen Kelleher and Karan Arora are our new Support Coordinators for the north and south of the UK. They introduced themselves briefly and explained their new roles, to provide outreach and telephone support and set up additional support groups.

Helen is responsible for setting up support groups in the north (Yorkshire, Cheshire, North Lincolnshire and further north into Scotland). Karan is covering Wales and anywhere further south. They both requested that any medical professionals or people with facial palsy get in touch with them if they would like to help with setting up groups in their local area.

Giving Tuesday – Karen Johnson
Karen Johnson explained our plans to get involved in #GivingTuesday, which launched in the UK on 2 December 2014.

Awareness Week 1 – 7 March 2015 – Karen Johnson

We then introduced our plans for a Facial Palsy Awareness Week which will run from 1 – 7 March 2015 and be held the first week in March every year that follows. The campaign ‘Face a New Day’ looks to raise awareness of facial paralysis by highlighting the social, physical and psychological consequences of the condition. The speech about our Awareness Week can be viewed on YouTube here.

#Facemyday selfies

Get family and friends involved during the week by sporting half a beard or half makeup. We want people to experience a day or week with a different face where people take a second glance.

‘Face a New Dawn’ Walks – Get involved by organising a dawn walk in your local area to raise awareness of facial palsy. More details will be available on our website after Christmas.

Awards and Thank Yous

We then went on to present some awards and say thank you to some of the people who have helped us throughout the year. The video of this can be viewed here.

Children’s Art Competition

During the AGM we had a children’s art area and competition to create a picture of the Facial Palsy UK Teddy Bear and name it. The winner was Mili who decided on the name ‘Smiley’. Prizes were given to all the children who took part because they all drew such wonderful pictures.

Grand Prize Draw

We announced winners of our Grand Prize Draw, these are detailed on our website here. Thank you very much for all your support either helping us to source prizes or by selling or buying tickets. We raised £2,897 towards our Research Appeal which is incredible!

Next year’s AGM will be held at the same venue, The Tabernacle in Notting Hill. We are however moving it forward to an earlier date to avoid it being so close to Christmas. Next year the AGM will be held on Saturday 17 October, times to be confirmed but it will be a daytime event. Thank you to everyone who helped out this year and to those of you who attended, we know some people travelled quite a distance to be there and we really appreciate it.

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.

• Selma Abbey shared her Bell’s palsy story in the Pick Me Up! Winter Special.
• In August Bethan Robertson-Smith received a Points of Light Award from David Cameron for her volunteering work with Facial Palsy UK. Bethan helps to run the Bristol Facial Palsy UK Support Group. Bethan was then invited on Geoff Twentyman’s show on BBC Radio Bristol to share her story. Following this she was nominated for a Bristol Post Gold Star Award which she received earlier this month. Then last Saturday Bethan was invited on to Dr Phil Hammond’s show on BBC Radio Bristol, the interview is live for the next month here, 1:46:30 into the programme. Bethan’s story was picked up by several different newspapers following the award from the Prime Minister.

Awareness Week – How you can help

In order to promote the Facial Palsy Awareness Week we urgently need new case studies to share their stories in the press, on television or radio. If you are interested in sharing your story with local or national press please get in touch. Our awareness week will be more successful if we can get as many stories out there as possible, so people really understand how it feels to live with facial palsy. BBC Scotland are also interested in helping to promote the launch of our first adult support group in Edinburgh next month. If anyone would be happy to be interviewed in conjunction with this, please get in touch.

Thank you to Maria Munir who came up with the concept for this poster (left). Thank you also to Go Displays who donated a display stand for us to use at exhibitions.

Running events

Brighton marathon 12 April 2015:

If you are interested in taking part in the Brighton Marathon next year, we have just three places left. Please click the link below to register for a 2015 place:

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

Please note: registrations must be received by the end of January 2015.

The Great North Run 13 September 2015:

We have four spaces available in the world’s greatest half marathon, please click the link below to register for a place:

Register for a place on the Facial Palsy UK team – Great North Run 2015

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!

New personal stories on our website

Personal stories are always very popular with visitors to our website.

• Joanne struggled to access follow-up care or support after being diagnosed with Bell’s palsy, she shared her story with us here.
• Emily developed facial palsy after having an operation to remove a dermoid cyst at the age of 4. She shares her journey here.
• Vivian offers a mother’s perspective on how it felt to have a baby born with facial palsy here.
• Some people have also submitted poetry about their experiences of facial palsy for the website 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.

And to conclude…

That is all our news for this time, thank you again for all your support over the past two years!

We’d like to thank the people who make donations, large or small, it makes a real difference to what we can achieve. Thank you also to organisations such as CIPFA and CCR EXPO who helped raise much needed funds for Facial Palsy UK, and to The Freemasons’ Grand Charity for their recent gift.

We do wish you all a restful and enjoyable Christmas and look forward to a positive 2015!