April 30, 2018
A warm welcome to all the new members of Facial Palsy UK’s growing community, we are glad you found us. If you are newly diagnosed please make sure you look at the self-help videos on our website which have lots of useful information.
Due to the new General Data Protection Regulations (GDPR) commencing next month, we will shortly be writing to some of our subscribers to ensure you still want to be contacted by us (those who joined our mailing list before December 2016). If you do still want to hear from us please keep an eye out for our GDPR email to find out how to give consent to being contacted in future. Alternatively, you could join our community and refresh your consent permissions at the same time. If you would rather not hear from us please use the unsubscribe option at the bottom of emails.
Facial Palsy Awareness Week 1st -7th March 2018
Thank you to everyone who took part this year raising awareness of all causes of facial palsy.
We had an extraordinarily busy week and it has taken some time to catch up. During the week people joined in the ‘What’s my number?’ campaign and made a splash on social media raising lots of awareness.
Thank you also to everyone who fundraised with events or on Facebook and made donations. Due to privacy settings Facebook don’t share with us who has raised what unless it is a birthday fundraiser so we are unable to always thank people personally. To date we raised £4,962 but funds are still coming in. Thank you!
Ironically Amazon Smile opened to new charities on March 1st, right at the beginning of Facial Palsy Awareness Week, giving another opportunity to raise funds for Facial Palsy UK.
Media coverage and stories shared
For Facial Palsy Awareness Week people shared stories about different causes of facial palsy in the press, on television, on radio, on our website and more. Click here for a full round-up of stories. Thank you to everyone who shared their story.
Pictured above are Darcy and family who organised a Family Bingo Afternoon during Facial Palsy Awareness Week and raised £1,803! Also pictured is a hamper from Manor Nursery Blackpool who raised £92.70.
The facial therapy team at St James’s University Hospital in Leeds raised £150 during Facial Palsy Awareness Week.
The Cheshire & Mersey Support Group raised £260 braving the cold weather at Liverpool 1.
This year we did a lot of work around Ramsay Hunt syndrome because it is frequently misdiagnosed meaning people often don’t receive the correct treatment in time. We released the results of our Ramsay Hunt syndrome survey during Facial Palsy Awareness Week, click here for our report and links to the survey results.
Our infographic highlighted important points about symptoms and recommended treatment.
We also published our first two Patient Guides:
Six other Patient Guides have been drafted and we are currently fundraising to get these designed, printed and distributed.
During the week we launched the Facial Paralysis in pregnancy Facebook group for those who have the condition in pregnancy or just after giving birth. We also added a new page to our website on this topic.
Houses of Parliament
In partnership with Helena g Anderson we organised an exhibition during week commencing 19th March in the House of Commons which was sponsored by Helen Whately MP. This was a series of self-portraits of Helena taken during her recovery from Ramsay Hunt syndrome. Helena volunteered many hours to support this project and enable it to take place. We were extremely grateful for this huge opportunity to raise awareness of facial paralysis and for Helena’s and Helen Whately’s support.
Download the accompanying booklet here
Helena will be talking through her photo diary at the London Support Group meeting on 16th June.
Participants wanted for research exploring experiences of accessing and receiving treatment for facial palsy in the United Kingdom
The University of the West of England, Bristol have secured funding to explore the experiences of adults whose lives are affected by facial palsy. This will contribute to a greater understanding of the psycho-social impact of the condition and people’s experiences of accessing and receiving treatment. We hope this research could inform the future care and provision of support for those affected by facial palsy.
Claire Hamlet, the lead researcher on the study is looking for people living in the UK and willing to share their experiences. Please download the information sheet about the study. If you are interested please contact Claire via email email@example.com or click this link to register your interest https://uwe.eu.qualtrics.com/jfe/form/SV_2obcUgXypqKEmfb
Northern Ireland update
Last month Facial Palsy UK’s Northern Ireland network held the inaugural meeting between patients and medical professionals in Belfast. Current issues around access to care and lack of awareness were discussed and objectives agreed. More research is being carried out since this very positive discussion and the next meeting will be held in June.
This Sunday it is the Virgin Money London Marathon. Alison and Sue are taking part and raising funds for Facial Palsy UK. Also this weekend Karen is taking part in the Rock ‘n’ Roll Madrid Marathon. Good luck and thank you!
Great North Run 2018
We still have two places in the Great North Run which takes place 9th September in Newcastle. If you know someone who is interested in taking part in this iconic event please send them to this link to book places.
Support group news
Unfortunately the Essex group which was due to meet this Saturday has had to postpone their meeting until Saturday 30th June. For more details please visit our website.
The speaker for our Edinburgh group on 12th May is Mahmoud Amir Alagha. He will talk about his research which uses technology to measure facial paralysis.
We are currently seeking some volunteer help as follows:
- Volunteer interested in PR who would be able to interview people, write up stories for our website and press releases.
- Volunteer experienced in HR who would be willing to answer ad hoc questions relating to Human Resources.
- Office based volunteer to liaise with community fundraisers (working from Market Deeping office).
- Volunteer speakers to share their story at Rotary Clubs, etc.
- Volunteer Event Coordinator with experience of putting on large fundraisers.
To express your interest in the first instance please contact the team on firstname.lastname@example.org explaining how you feel you could help.
Please note our PO Box has been discontinued and all mail should be sent to: Facial Palsy UK, Eventus, Sunderland Road, Market Deeping, Peterborough, PE6 8FD.
Thank you as always for your support.
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