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
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
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]
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.
Bethan Peach Expand Professor Bethan Peach (nee Lang) carried out her PhD research in the laboratory of Eric Barnard on the role of acetylcholine (ACh) receptors and after graduating, joined John Newsom-Davis myasthenia research group in Oxford until retirement in 2017. Her research at Oxford determined that Lambert-Eaton myasthenic syndrome (LEMS) was also caused by antibodies, which led to the use of steroids and other immunosuppressant drugs and to a much improved diagnostic blood test. Bethan is now a trustee of myaware and is currently chair of the medical/scientific committee. Married with two daughters, in her spare time she looks after her two grandchildren, multiple rabbits and chickens and pretends to enjoy watching her football team QPR.
Jon Rio Expand Jon lives in Stafford with his partner and dog (an Olde English Bulldogge called Bruce) having lived in central Birmingham since 2006, but originally hails from the South West. At the University of the West of England in Bristol, he studied Economics and now works at a trade credit insurer as Head of Policy Management & Operational Excellence. He was diagnosed with myasthenia gravis in 2009 whilst training for the London Marathon, had a thymectomy the following year and has since seen his condition stabilise with medication. Jon has been a member of myaware since his diagnosis and found the support valuable in understanding the condition and meeting others with it. Appointed as a Trustee of myaware in 2016, he is also on the Finance Committee – utilising his previous experience in credit analysis in addition to his current background in operations.
Rashmi Rungta Expand Rashmi has been working in a wide variety of technology and management consulting roles across multiple continents and industries for over 25 years. She has successfully setup high-growth, profitable business units and also delivered national and international expansions for SMEs. She serves on several boards including private and charity and is a school governor as well. She started experiencing Myasthenia symptoms at the age of 6 months and it took a good couple of years to actually diagnose the exact condition. Having been born and brought up in India, she was treated in the US with a thymectomy at the age of 7 years from UCLA and was also a research patient at NIH Bethesda at 10, as she was the only youngest patient to have ever developed generalised Myasthenia with no family history whatsoever. Not having known normalcy, she has managed her condition and her professional journey, not willing to let anything hold her back as much as possible. She has had a few relapses on and off and is currently on immunosuppressants. She is independent, has travelled extensively and lived in different continents. She is multilingual, enjoys spending time with friends and family, walking and volunteering with various charities in her free time. She has done 2 half-marathon night walks and a few 5 – 10Ks as well. Having experienced the condition first-hand her whole life and faced multiple challenges growing up, she is keen to work collaboratively with the board to raise the awareness as well as listening to others and sharing her personal journey.
Sara Jones Expand Sara is a chartered procurement specialist working as a Procurement and Social Value Manager for Ambition North Wales, a joint committee and decision-making body overseeing the North Wales Growth Deal. Sara was diagnosed as MuSK Myasthenic in March 2005 at the age of 30 and although found the diagnosis frightening with little knowledge or understanding of the condition, has over the years learnt a lot about herself and living with the condition with the help of myaware and some wonderful and knowledgeable health care professionals. Having Myasthenia has given Sara a lot of insight into life with a disability / long term condition and the passion and drive to fight for equality for this group of individuals. It’s allowed Sara to develop her understanding for the need for equality whilst remembering that each person is individual and has their own wishes and feelings. Sara is a school governor and also a community volunteer for the world-famous Only Boys Aloud and lives within the Snowdonia Range (Eryri) in North Wales with her husband, two children and a small menagerie of animals! She is a fluent Welsh speaker, a keen photographer and really enjoys arts and crafts.
Poland (MG Face To Face Association) Expand On June 7-13, the Myasthenia Gravis- Face to Face Association organized a Tour de Miastenia - Face to Face idea to spread awareness of myasthenia gravis through the involvement of a community of cyclists who will cover a route along the Wisła River, commemorating the passing from the myasthenia community of Marcin, Maria and Ewelina, who passed away this year. Explore their facebook event here On June 15, the Myasthenia Gravis Association - Face to Face, under the auspices of the Department of Neurology at Warsaw Medical University - ERN EURO NMD Rare Neuromuscular Disease Expert Center, the Polish Neurological Society, the Polish Society of Child Neurologists and the European Myasthenia Gravis Association EuMGA, is organizing an educational meeting for patients “Myasthenia gravis - a disease with many faces. Workshop for Patients and their Families”. It will be held from 11 a.m. to 4 p.m. at the Children's Clinical Hospital in Warsaw, 63a Żwirki i Wigury Street. The program includes lectures by doctors and a psychologist. June 29-30- Myasthenia Gravis Association - Face to Face organizes the first Nationwide “ MG Walk with Face to Face” (PL: MG Spacer z Face to Face). Details will be available at miasteniagravis.pl and on the organization's social media. They are also running a biweekly podcast “with myasthenia gravis over coffee” ( PL: Z Miastenią przy kawie) which will be weekly with special episodes in the month of June. (on spotify, youtube, apple) Visit their website
Spain (AMES) Expand June 3rd - Informative table at La Fe Hospital (Valencia) Bienvenida Ruix June 3rd - Informative table at Infanta Sofía Hospital (Madrid) June 3rd-7th - Photographic exhibition at Virgen de la Victoria Hospital (Málaga) June 10th – 14th - Photographic exhibition at Alta Resolución de Benalmádena Hospital (Málaga) June 12th and 25th - Webinar with AMES psychologist, Beatriz Hernández, for family members of people affected by myasthenia from 6:00 p.m. to 7:30 p.m. Visit the website
USA (MGFA) Expand The MG Awareness Wall (Jane Ellsworth's Kudoboard | Kudoboard) set up by the MGFA includes stories shared by patients from around the world. Get involved and add your story! The MG Awareness Toolkit (2024-MG-Awareness-Toolkit.pdf (myasthenia.org)) Can be used to help turn your efforts in raising awareness of myasthenia into action. A myasthenia colouring page for adults and children alike! (myasthenia.org) Myasthenia.org
USA (MGA) Expand June 11th – MG Pride Panel, celebrating the intersection of the LGBTQ+ community and those living with myasthenia gravis. Register for the event June 14th (Register by June 10th) – Designing our lives with myasthenia gravis, a virtual coaching group for individuals living with MG. This is a 6-month program. Join here June 24th – Webinar from Dr Tina Ipe discussing plasmapheresis (6:30-7:30pm CST). Register here Join the webinar View the website
Dr Channa Hewamadduma Expand Dr Channa Hewamadduma is a consultant neurologist with specialist interest in neuromuscular disorders at Sheffield Teaching Hospitals Foundation Trust (STHFT) and an Honorary Senior Lecturer at the University of Sheffield. He completed his PhD in neuro-genetics in Motor neuron disease, funded by a prestigious MRC Clinical Training Fellowship under Professor Dame Pamela Shaw. He conducts a portfolio of clinical and basic science research in neuro-genetics and neuro-inflammatory disorders in SITRAN (Sheffield Institute for Translational Neurosciences) and at STHFT. He is also the co-chair of the South Yorkshire and Humber neuromuscular network. Dr Hewamadduma is the lead clinician of the neuromuscular service at STHFT and runs the regional myasthenia gravis referral service for Rituximab and Efgartigimod. Dr Hewamadduma conducts a portfolio of clinical trials in myasthenia gravis in addition to other NM disorders. Investigating new therapies and understanding how diseases progress using biomarkers and patient reported outcomes (PROMS) are his key focusses. He is a member of the NICE/NHSE advisory panel on SMA related therapies and an invited clinical expert in NICE appraisal of therapies in myasthenia gravis. He enjoys teaching and set up the Myasthenia gravis master class to help teach clinicians, neurology trainees and allied health professionals. He enjoys gardening with a particular interest in Acers and traveling, especially off the beaten track.
Helen Critchlow - National Fundraising Manager Expand Helen joined myaware in 2017 as Regional Fundraiser for the Midlands and then became Partnerships & Events Fundraiser in 2021. During this time, she has spoken to, emailed, and met many of you to offer support with planning your fundraising events and activities. Helen took the role of National Fundraising Manager in July 2022 and is Iooking forward to leading the Fundraising Team to ensure all fundraising opportunities are maximised and that our loyal supporters and donors continue to be recognised and valued. In her leisure time Helen enjoys spending time with family and friends, walking in the hills around her Peak District home, and swimming at both her local indoor pool and lido. Email: [email protected] Telephone:01332 290 219
Jackie Thornhill - Office Manager Expand Jackie started working at myaware in 2001 and became office manager in January 2011. Jackie role is to deliver effective management of the Derby office and provide administrative support. To help provide excellent support to members of the charity and their families. To promote the missions, aims and objectives of myaware. Email: [email protected] Telephone: 01332 290 219
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]
ARGX-119 (Congenital Myasthenic Syndromes) Expand Company: Argenx Clinical trial(s): Phase 1b completed, Argenx have announced plans to advance the clinical development of this medicine.
Leanne Culson - Community Fundraiser Expand Leanne joined myaware as Community Fundraiser in September 2024. She works part-time and also works as a Psychotherapist in private practice. Leanne has over ten years’ experience working for a variety of health charities and particularly enjoys working with people in their local communities to raise money, increase awareness and reach new audiences. Leanne lives with her two children in Derbyshire and enjoys swimming, baking tasty cakes, reading and long walks in the Peak District. Email: [email protected]