Promoting your event in the press Expand Top tips for writing your press release Writing a press release can be a daunting task, but we are here to help with our handy hints and tips. • Create a catchy title - What makes a journalist read your press release rather than someone else’s? • It’s all about structure - Like any good story, a press release needs a structure to ensure success. • Keep your content brief - Journalists get sent many press releases every day so you will need to keep your content short and sweet. • Fun content is always the best content - You need to keep your content digestible and relatable. • Tell your story - No one is better at telling your story than you are. • Check your spelling - A press release with misspelt words and grammatical errors will never get past the most cursory of glances from journalists. • Think about formatting - Press releases need to be easy to read with good formatting. • Don’t be afraid to use images - We’ve all heard the saying – A picture paints a thousand words, and it’s true. • Don’t forget your contact details - The worst thing for a journalist is having a great press release sent to you but not having the contact details for the author. • Ask for help - Our Fundraising Team is always there to support you and your fundraising events. When writing a press release, in a paragraph, write about your event and what motivated you to do it. This section is all about you so the more personal, the better. This should be written in first person. Check out these guides to help you: Press release tips Press release template
Health & Safety for your event Expand Health & Safety tips Organising a fundraising event for myaware is an enjoyable way to bring family, friends and communities together while supporting a great cause! Please take some time to consider any risks that your activity might present, and also any regulations you should abide by. Here are some highlights of the areas you may need to consider. This is not a complete guide; it’s best to check with your local authority to make sure you’ve got everything covered. Safeguarding and consent If children and/or vulnerable people will be at your event, please ensure that you have taken appropriate safeguarding measures prior to the event. Food hygiene Food safety laws apply when food is available, whether it is for sale or not. Licences and permissions Ask your local authority whether or not you need to obtain any special licences (such as public entertainment, collection or alcohol licences). Remember - Keep records of everything you do for future reference. There are lots of other things to consider when organising your event, such as insurance and risk assessments, which may be a little daunting. Our helpful guide gives further details about these topics to make sure you have all the support you need. You can download the guide by clicking the link below Health & Safety Guide
Set up a Just Giving page Expand Setting up a Justgiving page Now you’ve got the event organised, it’s time to raise funds! JustGiving is a simple way to raise funds online for your event. It's quick and easy to set up a JustGiving page for myaware. Just follow the steps below to create your page Visit our JustGiving page and click ‘fundraise for us’ Set your fundraising target and aim your sights high! Tell people why you’re fundraising for Myaware & add a photo Share your page regularly on social media and email Get fundraising!
Setting up a Facebook fundraiser Expand Set up a Facebook fundraiser! A Facebook Fundraiser is another great and easy way to collect donations online. The money you raise will be sent directly to myaware and you’ll be able to easily share your target and progress with friends and family via Facebook. To set up a Facebook fundraiser, click on the link and you'll be guided through the steps to set up your own fundraiser on Facebook! Get fundraising!
Volunteering for myaware Expand We are always looking for volunteers to help with our fundraising. Here are a few ways that your group could volunteer to help us out:     Helping at in-store, supermarket, football ground and street collections.   Marshalling at an event or cheering on Team Myaware fundraisers at events such as the Great North Run.    We are so grateful to the hundreds of volunteers who help us get our message out there. We can always make use of your skills and passion, so please consider how your group might be able to help and join us in supporting vulnerable and isolated people living with myasthenia.    If you are interested and able to help, please contact [email protected] and a member of the fundraising team will be in touch to provide details of upcoming opportunities.  
Materials to order when setting up events Expand My materials order form We have a wide variety of materials that will help you raise awareness of your event and maximise your fundraising total. If you would like any of the materials listed, please state the quantity of each item and return the completed form to us along with any payment required. Order form coming soon
Teddy Bear's Picnic Expand Teddy Bear’s Picnic: So many young ones have a favourite cuddly toy, so why not make a plan for a teddy bear’s picnic? The children can invite parents, grandparents and carers to bring a donation and join in the fun!
What is Coronavirus? Expand COVID-19 is a disease caused by a new coronavirus that affects the lungs and airways. It is related to viruses that cause the common cold. Unlike the common cold, this virus is new, so nobody has immunity to it. For up to date information on Coronavirus and symptoms please click here Covid Aid is the UK’s national charity dedicated to supporting those significantly affected by Covid-19. For more details, click here.
General Guidance, Information and Support Expand Information and links to country specific general and specific advice for higher risk patients can be found on our website: General Guidance, Information and Support
Autumn 2023 Flu and Covid Vaccination Programme Expand Precautionary measure taken to protect those most vulnerable from illness during winter following the identification of Covid-19 variant BA.2.86. Vaccinations are now set to start on 11 September in England with adult care home residents and those most at risk to receive vaccines first. Autumn 2023 Flu & Covid Information
Evusheld Update Expand In March 2022, Evusheld was authorised for use in the UK by the Medicines and Healthcare products Regulatory Agency (MHRA). This treatment is aimed at adults who are unlikely to mount an immune response from COVID-19 vaccination or for whom vaccination is not recommended Procurement of this drug has stalled and myaware has been involved in asking for clarification as to why this drug isn’t yet available. For updates please see our website
Treatment Information Expand For further information on NHS and UK devolved treatments, please visit our website for Treatment Information High Risk Individuals The NHS offers treatments to people with coronavirus (COVID-19) who are at the highest risk of becoming seriously ill. The 4 treatments available are: Nirmatrelvir, ritonavir, remdesivir and molnupiravir which are antiviral medicines. Sotrovimab is an antibody medicine.
Advocacy Expand Myaware has taken the following steps to ensure that the needs and voices of our members are heard with regard to Coronavirus vaccinations: Myaware has written to the Ministers for Health in England, Wales, Scotland and Northern Ireland as well as numerous local MPS to request a statement of intent with regard to plans to protect those who are immunocompromised against the effects of Coronavirus. Here you will find a template letter if you wish to write to your local MP regarding this subject. Please see attached reply from Maggie Throup MP in response to a letter sent to Caroline Ansell MP by a myaware trustee. Myaware has joined www.nationalvoices.org.uk the leading coalition of health and social care charities in England so that members needs are represented. Myaware is a long term member of the Neurological Alliance www.neural.org.uk The Neurological Alliance is a coalition of more than 80 organisations working together to transform outcomes for the millions of people in England with a neurological condition. They campaign for high quality care and support to meet the individual needs of every person with a neurological condition, at every stage of their life. Myaware recently received the following information from Neurological Alliance regarding their advocacy work on behalf of those who are immunosuppressed or compromised.
Working Safely During the Pandemic Expand For up to date information on safe working practices please visit the Health and Safety Executive website.
Impact of Pandemic on Neurological Services Expand National neurology and neuroscience leaders warn of a perfect storm for services for people with neurological conditions resulting from the pandemic. In April 2021 The National Neuroscience Advisory Group (NNAG), a group of healthcare professionals, and national and local policy and commissioning leads patient groups working together to improve the quality of care for people living with neurological conditions, produced a report which shows the far-reaching impacts of the COVID-19 pandemic on people with neurological conditions and key services on which they rely. The report can be found here. Following on from this report, a petition has been prepared on the Neurological Alliance website: www.neural.org.uk (In conjunction with the MS Society) to Back the 1 in 6. (1 in 6 people are believed to have a neurological condition in the UK). There simply isn’t enough staff to cope with the number of patients. The aim is for a ‘taskforce’ to address these problems and create real change for everyone affected by a neurological condition. If you would like to add your name to the petition, and for more details, please click here.
Coronavirus Q&A 2021 Expand The myaware medical committee have recently put together an interview with Bethan Peach (chair of the myaware medical committee) covering all the frequently asked questions regarding Coronavirus and the vaccines. There is also a transcript of the interview to read. In April 2021, Bethan Peach (chair of the myaware medical committee) spoke to our support team covering frequently asked questions from our members. A video of the April 2021 interview is available via this link below: Watch the interview You can read a full transcript of the interview here. Q&A RE: Coronavirus Vaccines 19th October 2021 Please read our Q & A on Coronavirus Vaccines in full via the PDF: Updated Covid Q&A October 2021
webuybooks.co.uk Expand Convert your old CDs, books, DVDs, Blu-Rays, Lego, Audio Books, Video Games and Video Games Accessories into funds for myaware. 100% of the sale is then donated to myaware. Sign up to We Buy Books and raise funds for myaware Download the We Buy Books app or go to their website to set up a free account. Scan the bar code or type in the ISBN number on the item to receive a quote. Choose myaware as your chosen charity. Box the items up, print the label and drop it off at your nearest designated drop off point (or take the digital QR code into the shop and they will print the label for you.) You will be given a courier tracking code. Myaware will receive 100% of the amount.
Easyfundraising Expand Easyfundraising.org.uk is partnered with over 7,000 brands and allows you to support myaware while shopping online. Simply sign up here and use either the Easyfundraising website or app to search the online shop you want. Complete the transaction as normal and a percentage of your purchase will automatically be donated to myaware at no extra cost to you. £1 will automatically be generated and sent to myaware for every new sign up (no purchase necessary) from 8/3/23 - 22/3/23 Download the Easyfundraising app here
Nectar Donate Expand You can now support people who have myasthenia by turning your Nectar Points into impactful donations through Nectar Donate There are over 400 brands in the UK where you can get Nectar points from including Sainsbury’s, Esso, Argos, eBay, Debenhams, Just Eat + many more. Follow the link here for a full list of participating brands. Link your Nectar card to your Crowdfunder account or create an account if you don’t have one yet. Visit our myaware Nectar Donate page. Select ‘Donate with Nectar’ at checkout and choose how many points you’d like to donate. If you prefer to use an app to collect your nectar points then you can download the app here. If you need any help registering, please email [email protected]
The Wedding Shop Expand Celebrate your wedding with a gift that can help everybody in the myasthenia community. Let myaware be part of your special day by signing up to The Wedding Shop. Instead of asking for physical gifts, you can ask your guests to make an impactful donation to myaware through The Wedding Shop instead. Sign up to the Wedding Shop here Your guests can then donate online. Let all your guests know their gift will be helping us to raise awareness, provide vital support and fund research. After your wedding, the Wedding Shop’s financial team transfer the funds to us. For more information, please contact [email protected]
Recycling for Good Causes Expand You can create funds for myaware by sending in unwanted items such as watches and jewellery (anything from plastic beads to old broken gold chains); gadgets (such as cameras, games consoles, mobile phones, sat navs and MP3 players) and old currency (UK and from other countries) to Recycling for Good Causes. Sign up to Recycle for Good Causes and choose myaware! If you need any help registering, please email [email protected]
Trevor Ranson - Chairman Expand Trevor is a family man, married with children and grandchildren and has an interest in most sports. Trevor retired in 2017 having spent 40 years working in the animal feed industry in a variety of roles, and is currently Head of HR for an international animal nutrition company based in the East Midlands. He has a genuine interest in working with and helping people and has been involved with the Scout Association for many years. He is currently a Trustee and Chairman of the Charnwood District Scout Association and is also a Trustee of the Methodist Church in Loughborough. He is a past member of the Lions Club, a charity which is committed to helping the community. His interest in myasthenia developed in 2011, when he was diagnosed with myasthenia gravis, He found out about Myaware on the internet and found the information there invaluable in helping him to manage his myasthenia. Trevor helps in many ways to promote the charity and raise awareness.
Penelope Henrion Expand Penny Henrion has significant experience chairing NHS Boards and supporting Clinical Commissioning Groups. Her last role was chair of NHS Berkshire, the primary care trust responsible for assessing the health needs and designing ans commissioning the healthcare of the population in Berkshire. She worked closely with the chief executive and local hospitals to ensure the delivery of effective health services. She was always interested in listening directly to patients' and carers' experiences and taking these into account when planning services. Previously, Penny was chief executive of the Princess Royal Trust Carers Service in Berkshire, raising funds for its expansion and working directly with carers. In 2016, Penny was diagnosed with myasthenia gravis and now has experience of the NHS as a patient. Penny is passionate about gardening, loves walking and wildlife, yoga and singing. She has two adult children and now lives with Madeleine, her partner of 26 years.
Saiju Jacob Expand Saiju Jacob is a Consultant Neurologist at the University Hospitals Birmingham and an Honorary Professor at the Institute of Immunology and Immunotherapy at the University of Birmingham. He did his neurology training in London and the West Midlands and a clinical research fellowship at the University of Oxford. His doctoral thesis was on the clinical, immunological and neurophysiological aspects of myasthenia gravis, which was partly funded by the Myasthenia Gravis Association. Saiju has undertaken several clinical trials and studies in the field of myasthenia gravis and other peripheral/central autoimmune neurological diseases. He is the Training Programme Director for Neurology at the Health Education England, West Midlands and is also the Neurology lead for the Regional NIHR Clinical Research Network. He maintains an active teaching portfolio for both undergraduates and postgraduates, nationally and internationally. Saiju is one of the National Executive Council members of the Association of British Neurologists (ABN) and is a member of the ABN research committee and the specialist advisory groups on MS/neuroinflammation and neuromuscular diseases. He chairs the special interest group on myasthenia at the ABN.