Zara St Hilaire - Events Fundraising Officer Expand Zara joined myaware as Events Fundraising Officer in October 2024. Zara is still studying for her Master’s in Public Health but is very keen to get into the world of work and build up experience within the third sector. Zara is very enthusiastic about fundraising as she really enjoys bringing people together for a great cause whilst improving community health and well-being. In her free time, Zara attends her local Church, leading out in the Women’s and Youth Ministries. She loves travelling and has travelled with her Church all around Europe, North and South America and Africa. She has organised events in all these places and is excited to use her skill set and grow it whilst with myaware. Email: [email protected]
Lee Owen - Individual Giving Fundraiser Expand Lee joined our Fundraising Team in October 2021. Since the beginning of 2020 he has raised over £15,000 for different charities, including myaware. He has worked in the charity sector for seven years and is keen to support myaware’s donors and supporters through their fundraising ‘journeys.’ Lee’s wife has myasthenia gravis and his Grandad also lived with it too. He feels very honoured to be able to be a part of the myaware team Email: [email protected]
Anna Rankin - National support Co-ordinator Expand Anna joined myaware in June 2024. Anna has a lot of experience of working in the voluntary sector in various support focused roles, she also brings with her education and teaching experience. Anna is very much looking forward to using her skills and expertise to benefit the myaware community. Anna lives on the Wirral with her husband, their three young children, and their little lurcher, Watson. When she's not out enjoying walks with Watson, she can usually be found with her nose in a good book. Email: [email protected] Telephone: 01332 290 219
Laura Maloney - National Support Co-ordinator Expand Laura joined the national support co-ordinator team in May 2023. Laura has worked across the healthcare sector, offering signposting, support, and guidance for over ten years. She has experience supporting individuals with myasthenia and looks forward to supporting myaware members. In her free time, Laura enjoys listening to audiobooks, and spending time with friends and family. Laura is passionate about maintaining and improving quality of life, and she looks forward to meeting and supporting members in her role as National Support Coordinator. Email: [email protected] Telephone: 01332 290 219
Christine Cooke - Accounts Officer Expand Christine joined myaware in April 2018 and she works alongside Jamie. Her main duties include managing the income received, payments, banking, petty cash and thanking people for their donations. She originally comes from East Yorkshire and worked in an Accounts job for 17 years before moving down to Derbyshire in August 2017 with her dog Jessie. Email: [email protected] Telephone: 01332 290219
Suzanne Molloy - Administrator Expand Suzanne is one of our Administration staff. She has been with the charity since 2008. Suzanne worked as a fundraiser for 11 years specialising in raising money from grant making trusts and foundations. Suzanne now works as a full-time administrator and is enjoying her new role, which includes providing administrative and clerical support to maintain the smooth running of the charity, answering incoming calls, signposting members, supporters, and donors to relevant departments. She has a daughter and a little poochon dog called Bella. Email: [email protected]Telephone: 01332 290 219
Lianne Wallis - Administrator Expand Lianne joined myaware in 2019 working as an Administrator, assisting the Office Manager with all administrative tasks. Part of Lianne’s role includes the distribution of newsletters and other mass mailings, managing membership, and updating member consent information. Lianne also provides support to members via the telephone, by signposting them to the relevant members of our Support Team. Email: [email protected] Telephone: 01332 290 219
Claire Wen Expand Claire is a charitable partnerships specialist and currently leads the Trusts and Foundations programme at CARE International UK. She has previously worked at international organisations such as UNICEF UK and UNHCR, the UN Refugee Agency. Claire graduated from the University of Sussex with a BA in International Relations and an MA in Gender, Conflict and Violence (International Development). Claire was born with CMS and was diagnosed at 10 months old at Great Ormond Street Hospital. She has learnt to live with and manage her condition in daily life, and has deeply valued the support, advice and community at myaware. She lives in London and in her free time, Claire enjoys lifting weights at the gym, spending time with family and friends, meditation and travelling.
Katy Dodd Expand Dr Katy Dodd is a Consultant Neurologist at Manchester Centre for Clinical Neurosciences in Salford, where she works as part of the myasthenia specialist clinic, as well as providing in-reach for those with the condition admitted to hospital. She lives in the North West of England with her husband, two children and two cats. After completing Medical School in Liverpool, she worked in various hospitals across the North West as part of her medical training. She completed a PhD at the University of Manchester, which involved clinical and laboratory projects better understanding the response to immunosuppression in myasthenia. She currently continues her research through a fellowship from Manchester Academic Health Sciences Centre, including conducting a suite of Cochrane Systematic Reviews relating to Myasthenia Gravis. As neuromuscular junction lead for the Manchester Neuromuscular Research Group, she is working collaboratively with other neuromuscular specialists to increase the number of clinical trials and other research studies available to those with neuromuscular conditions in Greater Manchester. Dr Dodd supports various educational events for healthcare professionals, and volunteers for the Social Mobility Foundation, aiming to support those from lower socioeconomic background to achieve success.
Fundraising Ideas and Fundraising Pack a few ideas to help you to help the myasthenia community! Expand The sky is the limit when it comes to organising your fundraising event! There are many activities you can run which will help raise vital funds for myaware, the only charity in the UK solely dedicated to supporting people living with myasthenia. Here are a few ideas to help you to help the myasthenia community: Sponsored walk Football tournament Teach an online class, like yoga, knitting, guitar lessons and donate the proceeds to myaware Karaoke night or talent party Car boot or vintage sale Sponsored ‘giving up something you enjoy’ challenges – give up smoking, drinking alcohol or anything else you enjoy for a month! Bake-off competition Fundraising Pack For more ideas and guidance, look at our Fundraising Pack, which contains everything you need to help you fundraise successfully. Download it now: Fundraising Pack For further information and support, please email [email protected] Fundraising
Andrew Robinson - Treasurer and Interim Chairman Expand Andrew lives in Halifax, West Yorkshire. He and his wife have been involved with myaware since their daughter was diagnosed with myasthenia aged one. They are both members of the Brighouse support group. Andrew enjoy spending time with his family, walking and cycling. He is a chartered certified accountant. He has worked for a major building society and has been director of a textiles company and a property company. He is currently the finance manager of a theatrical organisation and also has his own bookkeeping business.
Marc Smith - CEO Expand Marc Smith joined myaware as CEO in August 2025 and comes with a wealth of experience from the commercial and not-for-profit sectors, most recently being CEO at Brain & Spine Foundation and Vice Chair of Neurological Alliance in England. A statement from Marc on his role at myaware: "I feel privileged to be leading the talented team at myaware at such an important time. We are here to support everyone affected by myasthenia, and especially our valued members.Our mission remains clear: to work alongside all those impacted by myasthenia to build a platform where their voices can be heard—expressing not only their needs today but also their hopes and aspirations for the future. This means continuing our vital work in providing information and practical support, enabling peer-to-peer connections, advancing research into new treatments and care, and ensuring we meet the evolving needs of our membership.This is a particularly important moment for people affected by myasthenias and other rare neurological conditions, as the government continues to consult on its 10-year plan for the NHS. We are all acutely aware of how underserved neurology has been in the past. With members’ help and collective voice, we aim to change that.We embrace the opportunity of collaborations with valued industry partners, working with our members to advance research and development of new treatments."
Tracey Maitland - Professional Support Services Co‑Manager Expand Tracey is a manager in our Professional Support Services team. She joined Myaware in September 2017 as a support worker for the Midlands area She was diagnosed with myasthenia gravis in 2003 and she now hopes that helping members with their journeys will be both rewarding and beneficial. Tracey loves all things, music, theatre, and travel and combines all these whenever possible! Email: [email protected] Telephone: 01332 949 161
Sarah Bailey - Professional Support Services Co‑Manager Expand Sarah is a manager for our Professional Support Services team. Having originally joined myaware in 2013 as a volunteer when her partner was diagnosed with myasthenia gravis, she then moved on to be an assistant Regional Organiser before taking up her current role in June 2021. She has a varied background including accounts, headhunting and Montessori teaching. Sarah enjoys lots of things, particularly anything relating to travel and food, and likes to relax with yoga, swimming, friends, and family - and Travis, the spirited miniature schnauzer! General Support Email: [email protected] Telephone: 01332 949 161
Cladribine (AChR, MuSK, LRP4, and Seronegative Antibody-Positive MG) Expand Company: Merck Clinical Trial: MyClad (Phase 3) more information Recruiting UK Sites: Sheffield and Nottingham NICE Status: Pending Cladribine is a B and T cell inhibitor that works to specifically target these immune cells.
Zilucoplan (Zilbrysq) (AChR-positive gMG) Expand Company: UCB Clinical trial(s): RAISE (Stage 3 complete) More information NICE status: Negative final draft guidance published after three committee meetings, myaware have appealed this decision, and the appeal has been upheld. We are now awaiting instructions from NICE regarding the fourth committee meeting. MHRA status: Approved Learn more about Zilucoplan.
Rozanolixizumab (Rystiggo) (AChR-positive and MuSKR-positive gMG) Expand Company: UCB Clinical trial(s): MycarinG (Stage 3 complete) More Information NICE status: Negative draft guidance published after first committee meeting, second and third committee meetings have now taken place (Q4 2025), and we are awaiting the outcome of these. MHRA status: Approved Learn more about rozanolixizumab.
Efgartigimod (Vyvgart) (AChR-positive gMG) Expand Company: Argenx Clinical trial(s): ADAPT (Stage 3 complete) More information and a paediatric study (actively recruiting) in Oxford. NICE status: Negative Final Guidance published in June 2025 after an appeal from Argenx and myaware. MHRA status: Approved Learn more about Efgartigimod.
IMVT-1402 Expand Company: Immunovant Sciences GmbH (Responsible Party) Clinical Trial: Phase 3 Recruiting Sites: Glasgow
Iptacopan Expand Company: Novartis Clinical Trial: Phase 3 Recruiting Sites: London, Southampton, Inverness, Swinton, Birmingham
T Cell Therapy (Myasthenia gravis) Expand Descartes-08 Company: Cartesian Therapeutics Trial: Phase 2b (estimated completion 31/3/26, no UK trial sites) YTB323 Company: Novartis Pharmaceuticals Trial: Phase 1/2 Recruiting sites: London and Sheffield CC-97540 Company: Juno Therapeutics, Inc., a Bristol-Myers Squibb Company (Responsible Party) Trial: Breakfree-2, phase 1 Recruiting sites: London (Barts), London (UCL), Manchester Royal Infirmary, Salford Royal Hospital Povetacicept Company: Vertex Trial: Coming in the first half of 2026 for myasthenia gravis
Grant Carpenter - IT and Digital Communications Manager Expand Grant joined myaware in January 2026 as IT and Digital Communications Manager. With degrees in Molecular Genetics and Science Communication and Public Engagement, he previously supported the charity as a freelancer, creating digital resources and designing the quarterly newsletter. In his current role, Grant leads myaware’s digital communications and IT systems, helping to develop the charity’s online presence, improve digital infrastructure, and support the organisation’s mission to reach and support more people affected by myasthenia. Grant loves to play video-games, build and paint Warhammer, and write campaigns for tabletop RPGs like Dungeons and Dragons. He lives in Glasgow with his wife, and their Patterdale terrier Mitzy. Email: [email protected] Telephone: 01332 290 219
Jamie Caple - Accounts & Compliance Manager Expand Jamie joined myaware in 2006 and has spent the past two decades building a steady career in finance and compliance. He enjoys the precision of working with numbers, especially the quiet satisfaction of a bank reconciliation landing perfectly on zero. He once received the team’s “Cool as a Cucumber” award, which he remains disproportionately proud of. Outside of work, Jamie likes to relax with podcasts. He is also a keen film enthusiast with a broad taste spanning independent cinema, foreign films, classics, and his long-time favourites like The Lord of the Rings trilogy. He enjoys exploring cosy pubs and good beer, whether locally or while travelling with his wife to comedy shows, music festivals, and the occasional visit to a National Trust site. Email: [email protected] Telephone: 01332 290219
Caroline Cameron - Welfare Rights Adviser Expand Caroline joined myaware in April 2026 bringing with her nearly two decades of experience in welfare benefits. She previously worked with the Citizens Advice Service across England and Scotland supporting people since 2007. Outside of work, Caroline enjoys exploring the countryside near her home in south-west Scotland, reading, and attending live music and theatre. She is also a dedicated trustee and volunteer with local organisations. Email: [email protected]