Spring Newsletter

March 18, 2014

Welcome to our Spring Newsletter

It’s been a very busy few months at Facial Palsy UK and we can’t believe that Spring is now just around the corner! We have plenty of news to share. We’d like to start by officially welcoming Alison Sweeting to the Trustee Board, details were finalised just before Christmas. Also we are delighted to announce that former chair of the Community Advisory Board Sarah Healey has accepted a position as Patient Representative on the Research Panel of the Medical Advisory Board. We know both will continue to make a very positive contribution to the work of the charity.

Bell’s palsy survey

If you follow our Facebook and Twitter pages you will already be aware that we have been running a fairly comprehensive Bell’s palsy survey over the past couple of weeks. The survey is due to close fairly soon so if you have ever had Bell’s palsy we would be grateful if you would complete it as soon as possible, here is the link:

http://fluidsurveys.com/s/bells-palsy-survey-260214/

Results will be published late March/early April on our website.

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.

Cambridge University student Amelia shared her Bell’s palsy journey with us in January, she wrote a thought provoking article about what faces symbolise in society.
Women in the third trimester of pregnancy are at higher than average risk of getting Bell’s palsy, Selma was just days away from giving birth to twins when she was diagnosed and shares her moving story here.
Formerly a soldier who has been to war, Marvin’s account of his Bell’s palsy experience is very powerful.
Sylvia was diagnosed with an acoustic neuroma at the age of 20. Like so many she has had a difficult journey to get the right help and shares her experience here.
Jeanette describes the dramatic effect Ramsay Hunt syndrome has had on her life and her on-going recovery journey.

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.

In the media

Trustee Ali Sweeting was featured in the March issue of Essentials magazine talking about her experiences of facial palsy after salivary gland cancer.

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.

Maria Munir spoke to the York Press about her experiences of being born with facial palsy.
Amelia Tearle shared her Bell’s palsy experience with the Northern Echo.

Support groups

Newly launched in the autumn, the Bristol and Manchester support groups have now had second successful meetings.

“I was so pleased to see a return of all the people who attended the first meeting. The atmosphere was very positive and informal discussion from the start set a friendly tone where everyone had the opportunity to contribute. The morning seemed to fly by.” Vanessa Venables (Bristol Support Group)

“Each member of the group spoke briefly about the onset of their facial palsy. The value of the support group quickly became apparent as everyone shared their feelings about their face, and frequently people were nodding in agreement and understanding.” Wendy Walker (Manchester Support Group)

To find out dates of forthcoming support group meetings please either contact us or visit our website here. We are still trying to expand the number of local groups we run and will keep you updated as new groups are launched. Scotland based therapist Penny Gravill has made a date for a support group meeting in Aberdeen in May. At the moment this is not an official Facial Palsy UK group because we have to be registered as a charity in Scotland in order to operate groups there, but we would be happy to put anyone interested in touch with Penny. The aim is for this group to have a more national base to it and for Penny to vary the location to suit for each meeting. There is also an adult support group being held in Glasgow on Monday 31 March at 2pm in the Jubilee Building of the Glasgow Royal Infirmary, again this is not an official Facial Palsy UK group but we are happy to pass on contact details so please get in touch if you would like more information. Please see our other exciting news about Scotland further down the newsletter.

Fundraising activities

You would think that the winter months are time to put your feet up and have a rest, but not for many of our fundraisers. We would like to say a special thank you to everyone in training for outdoor sporting events, many have braved the never-ending rain earlier this year to ensure they are event-ready. We even have a marathon runner from New York and we can’t imagine running in the snow has been much fun either!

We are very grateful to everyone who has given up their time to raise funds and much needed awareness, we really appreciate everything you do and would like to say thank you! Sometimes people fundraise anonymously or request no further contact when they send in fundraising monies or set up pages via JustGiving, so we are unable to thank these people personally, but we really do appreciate your efforts!

So what’s been happening?

Mrs Bailey sent a generous donation after catering for a birthday party
Denise Mulvaney is busy training for the London marathon
Andrew Abbey and four of his friends (Jamie, David, Rob and James) are running the Brighton Marathon to raise funds for Facial Palsy UK. Find out more about what inspired them to participate in our blog post here.
Even though Ollie Scott underwent surgery in late 2013 he has not put away his running shoes for long and is also taking part in the Brighton marathon in April.
Gary Kellas is spending his birthday running the Brighton marathon, now that’s commitment!
A physiotherapist at Queen Victoria Hospital and also the only female in our Brighton marathon team, Kirsty Rennison is going that extra mile for the charity.
Andrew Barnes already had a place in the Brighton marathon but decided he wanted to join our team and raise funds for Facial Palsy UK.
Brian Marcus is from the USA. Born with facial palsy he understands the need for a facial palsy charity and decided to raise funds for us. His chosen event is the Jerusalem half marathon, which he will also be running in memory of his mother.
Inspired by goddaughter Connie, Lou Miles is taking part in a London to Brighton 100km event in May.
Bethan Robertson-Smith has also put together a team to take part in the Bath Running Festival in July, we will have more news about that event next time. Bethan is eager to get more people involved so if you are interested please let us know and we can put you in touch.

Brighton Marathon

If you are in the area on Sunday 6 April, Trustee Alison Sweeting will be leading the cheers for our team of eleven runners taking part in this event. There are lots of ways to get involved, Alison will be handing out jelly babies, Jaffa cakes, oranges, bananas and plenty of drinks to our lovely runners. Please get in touch if you’d like to help out with keeping everyone topped up with goodies or simply become part of the cheering squad. It’s a great way to get more involved with the charity and show your support for all the hard work our runners have put in.

Thank you to those who have already offered support on the day, we really appreciate it!

Nick Bolding (above) is taking part in the Brighton marathon. Nick says: “My marathon ‘first step’ came when Karen and I attended a Facial Palsy UK support group after her surgery – I was so moved by the courage and kindness of the people we met that I knew I had to do something to support them.”

And more thank yous

We’d also like to thank the people who make donations, large or small. All of the support we receive is very much appreciated. Sometimes we are given the opportunity to speak about our work when receiving donations from fundraising, we are very grateful for being able to raise awareness in this way.

The Inner Wheel Club of Oxted and Limpsfield presented a cheque to Vanessa Venables on 15th January when they invited her to speak about the work of the charity. We not only want to thank them for their generous donation but also for the opportunity to raise awareness of facial palsy with their members.

Alison Sweeting also made a speech about the work of the charity at the Chartered Institute of Public Finance and Accountancy Annual Dinner from which we also received a very generous donation. We are very grateful for the support given.

New on our website

Thank you to the health professionals who have been giving up their time to help with content for our website. The following are new additions:

We’re also starting to add some frequently asked questions, if you would like to suggest questions to be featured here please get in touch. We have started to add some surgery videos under our Health Professionals pages for anyone interested.

“Onset of facial paralysis is often sudden and distressing and I know, from personal experience, that good quality information can make a real difference.” John Sudworth, BBC Shanghai Correspondent, Patron of Facial Palsy UK

Telephone support

We know that a lot of volunteers would like to get involved in offering telephone support to others who find themselves in similar circumstances. We are currently trying to put systems in place that will protect volunteers and also adhere to the strict data protection rules we have to follow. We’ve taken advice from other charities and established that we need a central secure online system which people can log into and record contact details and the nature of any enquiries, this is to ensure that no personal and sensitive information is kept in volunteers’ homes, and each volunteer’s private contact information is not passed on. If anyone has any IT contacts who can offer us support or advice in this area we would appreciate some help putting such a system in place.

Volunteers Research Register

Are you a person with facial palsy or a carer of someone with the condition?

Would you like to have a voice regarding future research in the area of facial palsy?

We are putting together a register of research volunteers and inviting people to take part.

Your input could be as little as giving an email “sound bite” about your condition or as large as participation in facial palsy trials. By volunteering to join the register you would in no way be tying yourself into future projects, simply indicating a willingness to be contacted regarding facial palsy research.

To register your interest please complete our online form or alternatively contact us with the following information:

Name
Email address
Contact phone number(s)
Postcode
Skype username (if applicable)

Future researchers would apply to Facial Palsy UK’s research committee for access to the research register and all research would need to be signed off by the Facial Palsy UK Medical Advisory Board research committee.

Scotland news

We are excited to announce that we are currently in the process of making the formal application to register as a charity in Scotland. We should have more definite news in approximately three months time.

This will enable us to extend more of our activities such as support groups across the border. We intend to make an official announcement in the press at the time so would like to hear from anyone living in Scotland who would be willing to be featured, see our media volunteers page for more information about how to get involved.

We also have ten charity places available in the Great Scottish Run (half marathon) which can be purchased directly 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.

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!

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 38 supporters who have so far raised £275.23 between them!

Until next time, thank you!

We’re continually improving our donation facilities. Supporters can now set up Direct Debits and also donate by telephone. To find out more please visit the Donate section of our website or contact us on 0300 030 9333. We’re very grateful for all the financial support we receive.

eepurl.com/s7HyL