New Year Update: Research, Support and Fantastic Fundraising

January 11, 2017

Happy New Year from all of us at Facial Palsy UK! This is a brief round-up of news and opportunities in the coming months. We are delighted to have three new Trustees joining the Trustee Board in 2017: Sheila Crowley, Sue Parsons and Becky Black, bringing our total number of Trustees to nine. Sheila has been a volunteer for the charity co-running the Norwich Support Group since it’s launch and is a chartered physiotherapist. Sue’s interest stemmed from having a daughter with facial palsy and she brings a wealth of business experience to the charity. Becky is our first Scottish trustee and was born with facial palsy, she has a strong interest in research.

Facial Palsy Awareness Week 1-7 March 2017

Please help us decide on the theme and activities for this year’s Facial Palsy Awareness Week by completing this short survey:
http://www.surveygizmo.com/s3/3291168/Facial-Palsy-UK-Awareness-Week-Survey

Research Participants needed

We are seeking volunteers to undergo a Surface EMG test at the Queen Victoria Hospital in January/February. Please visit the link below for more information and to volunteer:
http://www.surveygizmo.com/s3/3293300/FRAMESurfaceEMG

Are you in the UK and would like to have a say on the priorities for Facial Palsy Research?

If so please complete this online questionnaire. Full details of this project are available here. Please note that participants must be based in the UK. The first meeting is on Thursday February 23rd at 16:00 and will be held in central London. If you are interested please register your interest as soon as possible, as places at the face-to-face meeting are limited. Those who cannot attend the face-to-face meeting can participate by online survey. Please do share with others you feel may be interested in taking part.

Running events

Virgin London Marathon
We have two runners taking part in the Virgin London Marathon this year, Jonathan Eagle and Stuart Holland. Thank you both for supporting Facial Palsy UK.

Great North Run
We have four spaces available in the Great North Run which is on Sunday 10 September. Can you help us advertise these? Thank you to Lisa Howarth who has already signed up.

Thank you

Richard Hill and team
In the last quarter of 2016 we were supported by many different fundraisers:

  • Gavin Rampling – Beachy Head Marathon
  • Richard Hill, family and friends – Whitstable to Le Havre Cycle Ride
  • Guy Matthews, Aaron Walker, Sue McCullock and Kirsteen Kilgour – Great North Run 2016
  • Jaimie Thomas – Cardiff Half Marathon
  • Leanne Potter – Sportsman Pub fundraiser
  • Lewis Holleran – Pedal for Scotland: The Big Belter
  • Issie and Ethan Price – Sponsored cycle ride
  • James Haydon – Nuclear Obstacle Race
  • Claire Williams wedding party
  • Hailey Philipsen & James – 5k Inflatable Santa Run
  • Bobby House – Bradford City Run
  • Danielle Brown – charity tin collection at workplace
  • Rosie Skilbeck, Leamington Golf Club – Children’s Book fundraising
  • Epsom Rotary Club – Children’s Book fundraising
  • Kenn Valley Young Farmers Club – general fundraising
  • The Greyhound Inn, Arnold, Nottingham – Boxing Day football match

We also received a community support and research grant from the Masonic Charitable Foundation, funding from the Barbara Ward Children’s Foundation for our London family day and funds from the Norwich & Peterborough Building Society (Bretton), Thank you to all of our fundraisers and grant givers, we couldn’t do the work that we do without your help.

London Family Day

A reminder that our London Family Day is on 18th February. We have a real mixture of ages attending from toddlers to teens. Mr Ruben Kannan, consultant plastic surgeon at the Queen Victoria Hospital, will also be attending. It’s an opportunity for parents to ask questions in an informal setting. More details here.

New on our website

  • Brad’s Story – Brad was diagnosed with Bell’s palsy in May 2016. A keen weight-lifter, Brad’s confidence hit rock bottom after his diagnosis.
  • Eoin’s Story – Eoin shared his acoustic neuroma journey in video format to help others.
  • Chelsea’s Story – Chelsea shared her story about having facial palsy since birth.

In the press

Local press outlets featured the development of Smart Specs, our FRAME project in partnership with Nottingham Trent University, Coventry University, Queen Victoria Hospital and Emteq.

Our media volunteers Chelsea and Caitlin appeared on the Victoria Derbyshire programme to raise awareness of Changing Faces’ Face Equality campaign. Caitlin was also featured in the Somerset County Gazette.

Thank you to everyone who shares their story in the media raising much needed awareness.

Forthcoming Adult Support Group Dates 2017

For full details see our local groups page.

January 21st 10am – 12 noon
Cheshire & Mersey (in Liverpool)
East Grinstead

February 11th 10am – 12 noon
Norwich

February 25th 10am – 12 noon
Cornwall
London
Manchester

March 11th 10am – 12 noon
Exeter

March 25th 10:30am – 12:30pm
Midlands (in Birmingham)

April 22nd 10am – 12 noon
Newcastle

May 13th 10:30am – 12:30pm
Glasgow (pilot group)

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

And finally..

Now we have our new website it would be really helpful if you could follow the Join our Community link and sign up with more details about your contact preferences. Thank you as always for your support. If you would like to contact us about anything in this newsletter please email info@facialpalsy.org.uk or call us on 0300 030 9333. Thank you again, until next time.

Facebook Twitter Google Digg submit to reddit LinkedIn StumbleUpon Email