Spring Newsletter

April 19, 2017

Welcome to our Spring newsletter, we hope everyone had a lovely Easter break. We are currently extremely busy and have quite a few projects going on in the background. Priorities are investigating why many patients are being denied treatments and assessing how to change this situation. We are also planning a dedicated website for health professionals to encourage more collaboration and research to benefit patients with facial palsy. Our grateful thanks to those who battled Storm Doris in February to attend our Research meeting in London. Particular thanks to Bethan, Catriona and Claire who took over from the Facial Palsy UK team who were unable to get there due to trains being cancelled.

Facial Palsy Awareness Week Update

Thank you to all of you who organised events, supported events, baked, took leaflets to your GP, tweeted and re-tweeted, contributed to facebook, made a personal donation, told someone else your facial palsy story or told someone how much you valued their support.

Many people gave up their time during awareness week, some of you managed to persuade others to give up their time to help you.

We had a frantic but fun week and reached more people than ever this year thanks to your continuing support.

When Teddy Lost His Smile Page

The Children’s book was launched “When Teddy lost his Smile”.
This is an uplifting story for young children which explains the everyday problems that Rosie, a little girl living with facial palsy, copes with. She has support from her friends and her new Teddy who begins to understand how to live without a smile.

A number of books have been sent to children’s hospitals.
If you would like to buy a copy for yourself, a member of your family, a young friend or your local library or primary school to help to raise awareness they are £6.99 (plus p&p) and available from our online shop.

We created infographics to demonstrate facts about facial palsy covering topics such as blinking, synkinesis and general facts.

competition winner facial palsy awareness weekWe ran an advertising competition: One minute briefs. Participants were given the brief “Happiness isn’t always shown on your face” and ran with it. The competition was won by S3 advertising with the above design. This was judged to explain the message and encourage people to find out more about facial palsy. There were other excellent entries which people with facial palsy could really relate to and those ideas will also be considered for future use. During March 2017 we achieved 67,900 Twitter impressions, our highest ever for one month, an increase on March 2015 of more than 60%.

Although awareness week is not strictly a fundraising event we have raised a total of £6,825. Thank you!

We are already planning for next year so if you have ideas please let us know.

 

A selection of Facial Palsy Awareness Week (FPAW) Photos

A big thank you to everyone who took part in Facial Palsy Awareness Week!

Media Coverage

Hartlepool Mail – Chelsea said “It’s okay to be different”
Basildon, Canvey & Southend Echo – Claire shared her Bell’s palsy story.
Bourne Local & Stamford & Rutland Mercury – Launch of the children’s book.
Lancashire Telegraph – Cake bake Palsy support at Haslingden High School
Tamworth Herald – Izzy and Ethan Price ride 27 miles for Facial Palsy UK

New on our website

Bell’s palsy stories:

Ramsay Hunt syndrome story:

  • Roma’s story – Roma describes how specialist care helped with her recovery.

Facial palsy since birth:

  • Mandy’s story – Mandy describes her experiences of hospitals, schools and more.

Cholesteatoma story:

  • Sheila’s story – Sheila explains how facial palsy, an understanding surgeon and cancer changed her outlook on life.

Running events

Virgin London Marathon

We have two runners taking part in the Virgin London Marathon this Sunday. Jonathan Eagle and Robert Wildman. Please look out for them if you are supporting this event!

Great North Run

We have one space left in the Great North Run which is on Sunday 10 September. Are you able to help us advertise this?

Forthcoming Adult Support Group Dates 2017

For full details see http://www.facialpalsy.org.uk/support/local-groups/

22 April 2017 10am – 12 noon
Newcastle

13 May 2017
Cheshire & Mersey (in Liverpool, 10am – 12 noon )
Glasgow (note this is 10:30am – 12:30pm

3 June 2017 10am – 12 noon
Norwich

10 June 2017 10am – 12 noon
East Grinstead

17 June 2017 10am – 12 noon
London

24 June 2017 10am – 12 noon
Manchester

Thank you

So many people have been busy fundraising during the first part of 2017. Our grateful thanks to all those who have been taking part in running, walking and challenge events, held raffles and cake sales, face painting and more. We are also very grateful to those who share their stories either on our website or in the press.

Thank you to all of our volunteers, donors, fundraisers and grant givers, we simply couldn’t do the work that we do without your help.

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.

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