November Newsletter

November 17, 2015

Welcome to our latest newsletter. Autumn is finally here, Christmas is fast approaching and Facial Palsy UK is now three years old! Where has the time gone? This year we moved our Annual General Meeting (AGM) forward by a month to October which worked well for us so we will be repeating this next year. One change to next year’s AGM is that we are going to hold it in Peterborough where we are based. More news about this year’s AGM follows and finally we would like to welcome Lorraine Thurston who has joined our team as Support and Information Worker.

Annual General Meeting 17 October 2015

Our third AGM was attended by 60 people who travelled from across the UK. It was a family friendly event and it was wonderful to see children and adults alike enjoying the event. Thank you to the volunteers who helped with the event and thank you also to our fantastic guest speaker and Facial Palsy UK volunteer, Alex Barker.

Review of the Year 2014/15 – Karen Johnson, Deputy CEO

Karen reviewed the progress made in the last financial year by the charity. Key successes for the year included:

Four new Facial Palsy UK Support Groups in 2014/15 – 100% increase!
First ever Facial Palsy Awareness Week
194,000 unique visitors to our website, up 167% on previous year
We directly helped approx. 650 people
Charity now registered in Scotland
Two Family Days
Leaflet and poster sent to 97% of GP Practice Managers in the UK

Pictured left are the children who attended our northern family day at the end of June. We had a fantastic day at Whitehouse Farm Centre.

“Thank you, this was the best day of my life..” – Isabelle-Lilly (9 years old)

Karen acknowledged donations from Trusts and corporate support, and then discussed the efforts of those taking part in the Brighton and London Marathons.

She then went on to explain how volunteer Kay Turner had come up with the idea for the first ever Facial Palsy Awareness Week and what a success it had been in terms of raising awareness, particularly with the #FaceMyDay theme. In addition to this we also raised £13,400!

The invaluable contributions of volunteers were described and a thank you was said to every person and organisation who has supported Facial Palsy UK in any way throughout the year.

Financial Review

Karen then summarised the Financial Review for the year ending 30 June 2015 as follows:

Total unrestricted income from donations and fundraising increased by 14.74% to £53,623. £15,000 was excluded from this figure which was a donation from the charity founder to clear part of our debt left over from charity startup costs.
Unrestricted expenditure increased by 29% to £54,357. We took on Emily to join the office team and also moved into office premises in May because we were running out of space.
Our principal funding sources came from Individual fundraisers (£28.5k), Trusts (£19.5k) and Major Donors (£4k) with the rest of our income made up from general donations, merchandise sales, event income, affiliate scheme income, payroll giving and regular giving such as direct debits.

It was announced that the Research Appeal currently stands at £3,552 (this figure includes gift aid) and once we reach £10,000 we hope to try and get match funding.

Future plans

Lorraine Thurston (Support and Information Worker) will be developing the local support groups and answering any support enquiries received by the office.
We are hoping to put on a pilot Facial Palsy Conference weekend next year, for patients, their families and health professionals with a special interest in this area of medicine. This will be subject to funding.
Improved literature and posters into GP surgeries and hospitals with more detailed information for specific target groups.
Children’s book project subject to funding
More family days subject to funding
Improved website

Downloads

Read in more detail about our future plans in our Annual Report. Download here.
The draft minutes of this meeting are available here.
Review of the Year 2014/15 – download here.

Innovations in facial palsy rehabilitation – Charles Nduka (Founder, Trustee and Acting CEO)

Facial Palsy UK founder Charles Nduka gave a talk about a project he is working on which will enable patients to do exercises without using a mirror for feedback and enable health professionals to track patient progress remotely. More information will be made available when the project is fully funded.

#ServeAlex Campaign overview & update – Alex Barker (Facial Palsy UK volunteer)

Alex talked about his experiences this summer when he was refused a drink at a pub in Falmouth because they mistakenly thought he was drunk. An engaging presenter with a real determination to not accept ignorance from others; Alex described how with the help of charity Changing Faces and Facial Palsy UK, he refused to accept this treatment and ensured his voice was heard. You can hear his full speech on our YouTube channel here. Download the accompanying PowerPoint in pdf format here.

Awards and Thank Yous

Trustee and charity co-founder Vanessa Venables described the work of volunteers and thanked people for their contribution.

Trustee Fiona Hawthorne (pictured) presented some awards, the full speech and details of awards can be viewed on our YouTube channel here.

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 £1,885 which will go towards our Support Services. Thank you!

Save the date – AGM 2016

We are moving our AGM to Peterborough next year, the venue will be the Great Northern Hotel which is directly opposite Peterborough Train Station. The date will be Saturday 8 October 2016 with exact time to be confirmed. Peterborough can be reached in 50 minutes from London Kings Cross. The city is also easily accessible by road and the venue is close to the city centre multi-storey and station car parks, as well as bus station. If you decide to make a weekend of it, nearby Stamford is worth a visit, the historic setting for many films and television shows including the 2005 film Pride and Prejudice. Peterborough Cathedral is one of the finest Norman cathedrals in England and Catherine of Aragon was buried here in 1536.

Again 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 with us and we really appreciate it.

Medical Advisory Board Update

We welcome the following new members to our Medical Advisory Board and thank them for their valuable input and support.

Margaret Youatt – Team Leader Physiotherapist in Plastic and Reconstructive Surgery at Norwich and Norfolk University Hospital Trust
Richard Irving MD FRCS (ORL-HNS) – ENT Consultant Neurotologist at Birmingham’s Queen Elizabeth and Children’s Hospitals
Paolo Matteucci – Consultant Plastic and Reconstructive Surgeon at Castle Hill Hospital and Hull Royal Infirmary

Find out more about our Medical Advisory Board members on our website.

Support

An introduction from Lorraine

“It was fantastic to meet so many volunteers and supporters at the AGM together with board members and trustees. I have also spoken to some of you on the phone or by e-mail and am starting to understand where everyone fits in. I have spent most of my working life in the NHS or charities and I was attracted to the job at Facial Palsy UK because it is an opportunity to use my skills in health and counselling.

My job title here is Information and Support worker and I am passionate about this – but what does it mean for you? Initially I will be supporting the support group leaders, dealing with general phone and e-mail enquiries and learning as much as I can about Facial Palsy UK.

Our charity has an exciting future and I hope that you will continue to be involved. I am genuinely interested to receive feedback about any information and support topics.”

– Lorraine Thurston

London Support Group

The date for the next meeting has not yet been finalised but is scheduled for Feb/March. The venue will be Guys Hospital. Please contact Lorraine Thurston on support@facialpalsy.org.uk if you plan to be there, or have any requests for presentation/discussion topics. Also, co-facilitator Philippa would love to hear from any members who might be willing to say a very few words at her workplace event in Facial Palsy Awareness Week in March.

Edinburgh Support Group

Next meeting 28th November 2015, St John’s Hospital at Howden. Patrick Addison is giving a talk about Botox and surgical options.

Cornwall Support Group

Next meeting 23rd January 2016, Duchy Hospital.

East Grinstead Support Group

Next meeting 23rd January 2016, Queen Victoria Hospital.

Norwich Support Group

Next meeting 23rd January 2016, Bob Champion Research Education Building.

FULL DETAILS ON THE WEBSITE UNDER ‘SUPPORT’

Diary Dates

Facial Palsy Awareness Week 1-7 March 2016

Join us in raising awareness of facial palsy across the world. Visit our website for updates.

Brighton Marathon 17 April 2016

Three spaces left in this event. Find out more.

Great North Run 11 September 2016

Six spaces available in this event. Find out more.

Fundraising news

We would like to say a huge thank you to Andrew Telfer, Beth O’Gara, Daniel Stone, James Wokes, Kate Newman, Oliver Rickett, Omar Ahmed and Victoria Kent who completed the Great North Run in September.

And also Megan and Abbie Telfer who took part in the Junior Great North Run – Thank you!

We are also grateful for the help of Helen and our volunteers, Elaine Coleman and June Gardner who gave up their time to support our runners.

Steven Goss from Your Relaxing Times kindly donated massage vouchers for our runners and organised a raffle which raised £40.

Thank you to you all!

All of our fundraisers make a real difference to the work that we do, if you would like your fundraising event to be featured in future newsletters please do let us know. Thank you also to those who have made donations large and small to help support our work, every penny makes a real difference to the lives of people with facial palsy. Visit our JustGiving charity page to see just some of the reasons why people are supporting Facial Palsy UK.

Christmas

Please visit our Christmas page to find out about our plans for the festive season. These include:

Our Christmas Appeal to raise funds for the Children’s Book
Facial Palsy UK Christmas Cards
Christmas Card Design Competition
How you can support us via GiveasyouLive at no extra cost to you

Until next time…

We’re really excited about our future plans for the charity and hope you will take the time to read our annual report. In the words of Trustee and co-founder of Facial Palsy UK Vanessa Venables “Everything you do or have done for the charity is breathing life into it and without that we wouldn’t exist, so our thank yous and recognition of this are really the most important thing.”

If you would like to contact us about anything in this newsletter please email us on info@facialpalsy.org.uk or call us on 0300 030 9333. Thank you again for all your support.