July Newsletter 2015

July 24, 2015

Welcome to our latest newsletter. It’s been a busy couple of months for us with our first Family Day in the north of the country and we’re making plans for a Facial Palsy Conference Weekend (subject to funding) next year as well. We’re also delighted to report that Facial Palsy UK has been chosen to be an official partner of the Northampton Town Football Club Charitable Foundation for the next year. If anyone is from the Northampton area and would like to get involved with a match day collection or distributing our leaflets and posters to health care providers in the Northampton area please get in touch.

#ServeAlex

Firstly, a story about Alex Barker, one of our volunteers, who was refused service at a Cornish pub this month. Alex has Moebius syndrome which affects him in different ways, he has bilateral facial palsy and describes himself as having an ‘unusual walk’. Bar staff mistakenly assumed Alex to be drunk and asked him to leave the premises.
Alex’s experience is sadly not uncommon for people living with facial palsy so he is determined to raise awareness and stop this experience happening to others in the future. His story received national media coverage and a social media campaign, ‘#ServeAlex’ was set up by the charity Changing Faces.

This weekend, accompanied by Changing Faces, Alex will be travelling from his home town of Coventry back to Falmouth. He’ll be stopping along the way at pubs who have agreed to take part in the #ServeAlex campaign. Keep an eye out for him in Worcester, Bristol, Taunton, Exeter, Bodmin and Truro en route. As well as raising awareness of new licensee guidelines published by Changing Faces this week, Alex will be fundraising for Changing Faces and Facial Palsy UK, so we can do more work in this area. To read more about Alex’s campaign and to make a donation, please visit www.servealex.co.uk.
Thank you Alex for raising awareness!

Save the date

Facial Palsy UK AGM – 17 October 2015 (London – daytime)

Fundraising news

Next we would like to thank Timma Marett who with the help of family and friends, raised £150 by holding a cake and clothes sale. Timma raised awareness by handing out leaflets and we have been told that the Facial Palsy UK balloons were a big hit with children. They were also joined by a face painter and Peppa Pig! Thank you Timma, Dan, Joshua and Zac.

Thank you also to Helena Grant who completed The Way of the Roses cycle route in four days and raised funds for Facial Palsy UK at the same time. Travelling from coast to coast (Morecambe to Bridlington), Helena cycled 170 miles across beautiful and varied landscape. She says there were some horrible hills on day 2 but states it was well worth the effort because she raised £300 in sponsorship! Helena is pictured at the final point of the four day challenge. Thank you again Helena!

Thank you to Bethan for organising a fundraising event in Bristol last month. Beth’s Face The Music event raised over £1,000 for Facial Palsy UK! Bethan created an awareness gallery to inform the public about facial palsy. The gallery included photos of people with facial palsy, information videos, leaflets and posters. In the evening, there was an enjoyable night of music and a chance to win one of the brilliant raffle prizes that were kindly donated to the event. Thanks again Beth for all of your hard work!

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. Special mention must also be made to the Northern Norwich District Scouts who chose Facial Palsy UK as their charity of the year on the suggestion of Rainy Watson. Thank you everyone!

Whitehouse Farm Family Day

We held our first Northern Family Day last month. We all had a brilliant time and lots of new friendships were made, children and parents alike. Thank you to all of the families that came to Whitehouse Farm and to our volunteers who helped make the day so special.

The last words of the day came from a little girl who said “Thank you, this has been the best day of my life.”

If you are interested in attending future Family Days please get in touch. We are currently seeking funding for our next Family Day and are looking at Conkers (south Derbyshire) as a potential venue. If you work for a company that may like to support this event please let us know.

Support

Please see below a list of our current support groups and details of those coming soon.

Adult support groups

• Midlands – next meeting planned Autumn 2015, date to be confirmed.
• Bristol – next meeting to be confirmed
• Cornwall – next meeting on 25 July 2015
• East Grinstead – next meeting 26 September 2015
• Edinburgh – next meeting to be confirmed
• London – first meeting 12 September 2015
• Manchester – next meeting date to be confirmed
• Newcastle – next meeting 10 October 2015
• Norwich – next meeting to be confirmed

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

Future plans

We are currently looking into organising a large weekend Facial Palsy conference next year. Please look out for invitations to surveys in future newsletters or on Social Media to have your say about topics that interest you.
We have also put our charity on the waiting list to be registered in Northern Ireland, more information coming soon.

Support and Information Worker role – office based in Peterborough

We will shortly be advertising for a part-time Support and Information Worker based here at our office in Market Deeping, Peterborough. You can now read the full job description and find out more details on our website. If you would like more information please get in touch.

Aviva Project

Last month we asked you to vote for our Children’s Book Project in the Aviva Community Fund Awards. Your votes secured us a place in the finals but unfortunately our project was not selected by the judges to receive funding. Thank you to everyone who voted and supported us and to Oakwood Insurance Consultants and Financial Services for putting our project forward. We will continue to raise awareness and explore alternative ways of funding this project to support children and families affected by facial palsy in the future.

PMFA News

Facial Palsy UK features in the latest issue of PMFA (The Bimonthly Review of Plastic & Maxillo-Facial Surgery and Aesthetic Medicine). Click here to read the article online. You can also read Charles Nduka’s Facial Palsy Awareness Week diary on page 34.

Running events

The Great North Run 13 September 2015

We have now filled all the extra places in the Great North Run this year. We have 10 runners who are busy training for September – thank you! If you would like to help out on the day please get in touch.

Brighton Marathon 17 April 2016

We now have details on how to sign up for next year’s Brighton Marathon on our website.

Until next time…

We wish everyone a wonderful summer, let’s hope the weather cheers up before long! Please make a note of our next AGM on 17 October. Exact times are to be confirmed although it will be a daytime event and will be held at The Tabernacle in Notting Hill again, same place as last year. 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 for all your support.