Late Summer Newsletter including AGM information

September 5, 2016

Welcome to our late summer newsletter as we look forward to completing lots of exciting projects over the coming months! We also want to say many congratulations to our volunteer Alex Barker who recently became engaged to the lovely Erin from the USA! Many of you will remember Alex from the speech he gave at our last AGM and the #ServeAlex campaign.

Current Projects

After a successful year of fundraising we have lots of projects currently underway or nearly ready to start, these include:

  • First Children’s Book (with hopefully two more to follow shortly): We need yours and your children’s help. If you would like to be part of a panel that gives feedback about the story text, etc. then please get in touch. We are hoping to launch the first Children’s Book during our next Awareness Week (1-7 March 2017).
  • Awareness Campaign: We are currently redesigning our general leaflet which should be going to print by the end of this month.
  • Support Services: This is an ongoing project. If you are a health professional interested in starting a facial palsy support group please get in touch.
  • Patient Guides: We’ve received funding to create eight downloadable patient guides for GPs and hospitals to provide to patients. Topic areas are: Bell’s palsy; Ramsay Hunt syndrome; Bell’s palsy in pregnancy; Facial palsy in children; Facial palsy from trauma; Lyme disease and facial palsy; Facial palsy after cancer; Facial palsy after tumour removal. We will need feedback from people who have been affected. If you would like to have some input into reviewing content to be included please get in touch. We understand there are other topics to cover as well and these will be expanded upon when funds become available.
  • GP Education: We have funds set aside for GP education. We plan to create GP downloads and training dvds about facial palsy covering topics such as diagnosis, holistic patient care and more.
  • Website: We are excited to announce that we have received a grant from the Big Lottery Fund to update our website making it mobile friendly and easier to find information. This will also reduce the costs of maintaining the website. This project is currently underway and we expect to launch our new website before the end of the year.

Starting School

We recently created a document which may be useful to share with teachers when a child with facial palsy is starting school.

Download our Starting School document.

Great North Run

We will be greeting our runners in the Great North Run as they finish in South Shields on 11 September. If you would like to come along and join us please get in touch! Good luck and thank you to all of our fantastic runners!

Annual General Meeting

A reminder that our AGM is being held in Peterborough this year at the Great Northern Hotel on 8 October from 12 midday until 3pm. A light lunch is included for guests. This is an ideal opportunity to find out more about the charity’s work and meet others with the condition. This is a family friendly event. We will need to have some idea of numbers by the middle of September so we’ve set up a page where you can register for your free tickets here.

Itinerary includes:

  • Review of the year 2015/16 – Facial Palsy UK
  • Talk by Andi Heaton, Senior Psychological Therapist: ‘Understanding and managing the psychosocial impact of a facial palsy’
  • Talks from Mandy Brailsford who has had facial palsy since birth and Selma Abbey who had Bell’s palsy in pregnancy.
  • Flute performance by Rebecca Woodfield.
  • Special announcements.
  • Announce winners of our Grand Prize Draw.

The venue is directly opposite the entrance to Peterborough train station and also easily accessible by road as Peterborough is situated on the A1.

Grand Prize Draw

Grand Prize DrawSix fantastic prizes to be won including two fabulous weekend breaks in Scotland and England, a sought after divers watch, stadium tour of Leicester City Football Club and two signed rugby balls.
Buy tickets online here or contact us if you would like to sell tickets to raise funds for Facial Palsy UK. Funds raised will be used to develop further patient guides and make them available in different formats. Winners will be drawn at our AGM on 8th October 2016.

Design a Christmas Card Competition Winners

We’re delighted to announce the winners of our design a Christmas Card Competition.

  • Christmas Tree by Natalia Neville aged 5 (4-11 years category)
  • Angel by Amy Barlow, aged 12 (12-17 years category)
  • Reindeer by Michelle Peet (Adult category)

Thank you to all those who entered. Cards will be available to order online in the Autumn and also at our AGM.

Fundraising events

Thank you to Debbie and Steve Byles and friends who raised an amazing £9,795 at their recent CharityFest event. These funds will be used for GP/Health professional education about facial palsy to ensure patients receive the right support and information at the time of diagnosis.

A fundraiser was also organised by Sue Parsons this weekend at the South Croydon Conservative Club in aid of Facial Palsy UK. Thank you for all your support.

Thank you to all of our fundraisers, we couldn’t do the work that we do without your help.

Family Days

Our latest Family Day was at Conkers on 2 July. Alder Hey Team lead Adel Fattah and his wife also attended, giving the parents a chance to have an informal chat with him about facial palsy. It is also nice for the children to see a surgeon in a different environment.

We are now seeking funding for our next Family Day. Do you have a workplace that may want to fundraise for this? If so please get in touch.

Family Day

New on our website

Rainy’s story – Rainy was diagnosed with Bell’s palsy over 10 years ago but has still found joining the Norwich support group really beneficial.

Self Help Videos

Management of Flaccid Paralysis (Floppy face)
Management of Synkinesis (Tight face)
Calming Practice for the Face and Neck (audio only)

Merchandise

New zip buddies and car stickers are now available to purchase via our website. More details here.

In the press

July 2016:

Lily Robinson was in CHAT magazine raising awareness of Bell’s palsy
Hannah Clark was in Take a Break magazine raising awareness of Bell’s palsy

August 2016:

Norwich & Peterborough Building Society make a £200 donation to Facial Palsy UK
Hannah’s story was also picked up by the Daily Mirror

Magazines are now planning their Christmas stories. If you were diagnosed with facial palsy at Christmas time or perhaps you had smile surgery just before Christmas, and you would like to share your story, please get in touch. Thank you to Lily and Hannah for raising awareness.

Support Group Dates

Adult support groups

Newcastle – next meeting on  01 October 2016
Norwich – next meeting on 5 November 2016
Cornwall – next meeting on 15 October 2016
East Grinstead – next meeting on 17 September 2016
Edinburgh – next meeting on 12 November 2016
Manchester – next meeting on 19 November 2016
London – next meeting on 15 October 2016
Exeter – next meeting on 3 September 2016
Midlands – next meeting on 3 September 2016
Bristol – next meeting date to be confirmed (please email us to express interest)

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

And finally..

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.

News Categories: Events  / Family Days  / Fundraising news  / General news  / Support groups  /