Say hello to the Beacon team!
Our team continues to thrive due to the generosity and support of the rare disease community. We treasure working with patient groups and collaborators to break down barriers and transform the patient experience. It is extremely rewarding to help patient groups form, grow and professionalise, so no one has to face their rare journey alone.
Our team adheres to Beacon’s founding values by ensuring that every project, training or event is:
- Patient centred
- Innovative
- Impact driven
- Collaborative
- Positive
- Personal
We want every interaction with us to be positive and personable. Our team is approachable, welcoming and ready to drop everything to help you reach your specific advocacy goals. We’ll be the first to offer our support or point you in the direction of those who are better suited to assist you. We’ll go the extra mile for you, simply because you go the extra mile for your community.
Keep on reading to get to know us better!
Our staff
Rick Thompson
Mary Rose (MayRo) Roberts
Blayne Baker
Hannah Harvey
Niamh Antrobus
Gabriel Ortega Toledo
Elizabeth Proctor
Megan Burley
Jeffery SirMoo
Our trustees
Our team would be lost without the guidance and support of our charity trustees. Our trustee board is comprised of accomplished life sciences professionals and consultants working in the branding, business, communications and healthcare sectors. Our trustees bring a wealth of knowledge and experience to Beacon with many being touched by rare disease personally.
Read their individual bios now to learn more about these exceptional individuals.
Sophie Costello
Chair of Trustees
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Sophie is the founder and CEO of Costello Medical, a consultancy supporting the healthcare sector in the analysis, interpretation and communication of clinical and health economic data.
The company has grown from a team of 2 in 2008 to over 160 staff in 6 offices across 4 countries. In addition to their work for pharmaceutical and public health clients the teams at Costello Medical also work on a pro bono basis for a wide variety of charities.
Sophie lives in Cambridge with her husband and outside work is kept busy caring for her four young children.
Tony Hall
Vice Chair and Co-founder
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Dr Anthony Hall graduated from King’s College London with first class honours in physiology and pharmacology before going on to study medicine at the Royal Free Hospital.
He joined the pharmaceutical industry in 1994 and has significant experience in the clinical and regulatory development of drugs for rare diseases.
He speaks regularly at rare diseases conferences, is author of a number of articles on orphan drugs and is a member of the IRDiRC Working Group on Orphan drug-development and regulatory processes.
Edna Kissman
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Edna Kissmann is one of the owners and senior partners in Kissmann Langford, a strategic communications consultancy.
Previously, she served as Assistant Press Secretary to the late Prime Minister Rabin of Israel and as Global Chair of Healthcare Practice and Chief Knowledge Officer at Burson-Marsteller, a major communications company.
She has been a trustee of the Ashoka Fellowship of Social Entrepreneurs and is now a member of the Ashoka Support Network.
Andy Milligan
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Andy Milligan is a leading international brand and business consultant and a founding partner of The Caffeine Partnership, which provides ideas, energy and advice to senior managers on business growth and brands.
His experience spans industries as diverse as airlines, financial services, fast-moving consumer goods, telecommunications, sports and leisure and pharmaceuticals. Andy has published five bestselling business books.
Jo Pisani
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Jo is a partner at PwC where she leads the UK Pharmaceuticals and Lifesciences business. She advises companies, investors and ministries of health on strategies to grow the Lifesciences industry. She is passionate about public health issues such as dementia, antimicrobial resistance and rare diseases.
She is also a trustee for the UK Dementia Research Institute and advisory board member for MedCity and University of Strathclyde’s CMAC.
She lives in London with her husband and teenage daughter and is passionate about film, cycling and travel.
Our Patient Group Engagement Committee
Our Patient Group Engagement Committee has been helping us keep the patient group voice at the heart of our work since 2017.
Today, it stands as a vital advisory board that helps us to:
- Keep up to date with the needs and priorities of the rare disease community
- Identify new projects
- Develop our existing events and projects
- Evaluate our services
Our rotating committee brings their insights, expertise and lived experiences to the table to help ensure that we are meeting the ever-growing needs of our patient group community.
Get to know the members of our 2025 – 2027 Patient Group Engagement Committee now!
Anthony Brown
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A lifetime’s experience of Charcot-Marie-Tooth disease has motivated Anthony’s interest in the strengths of others living with rare disease.
He’s keen to understand how those individuals interact with healthcare, education, workplaces and other facets of society. As a geneticist who likes to make stuff work, he has spent a career designing and manufacturing genetic testing tools in the Cambridge biotech community.
Now that his children are beginning to leave home, he is investing his spare energy in ‘a cappella’ harmony singing
and riding bicycles.
Clare Sargeant
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Clare Sargeant is Treasurer and Trustee of the CSF Leak Association, having first joined as a patient member in 2017. Prior to experiencing the overwhelming effects of a CSF leak, Clare enjoyed an active early retirement following a successful career as Financial Controller and Company Secretary for a tech start-up.
Her search for answers led to the diagnosis of several rare diseases, revealing stark disparities in care between rare and common conditions. Clare is a passionate advocate for equitable healthcare and she is especially grateful to Beacon for connecting her with inspiring figures across the rare disease community.
David Elvy
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David is a retired police officer living in Kent. His daughter, now an adult, has a very rare genetic/metabolic condition called PMM2-CDG (Congenital Disorder of the Glycosylation). There is no current cure (although research is ongoing) and it’s a question of managing the symptoms, which isn’t easy as it’s a bodywide disorder which can affect many organs and systems from head to toe.
Despina Dinca
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Despina is Charity Manager at Advocacy for Neuroacanthocytosis Patients, supporting individuals, families and carers affected by ultra-rare neuroacanthocytosis (NA) syndromes, neurodegenerative disorders which have no cure and very little therapeutic support.
With over 30 years’ experience in operations, partnerships, and marketing, and 18+ years in health charities, she is passionate about amplifying patient voices, driving collaborative research, and developing initiatives such as international patient registries to improve outcomes for rare disease communities.
Diana Perry
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As Founder and CEO of the Ectodermal Dysplasia Society, Diana has worked on a full-time voluntary basis since 1996. She is married to Ian and has five children, two of whom are affected by Ectodermal Dysplasia.
Over the years, Diana has gained extensive knowledge and experience of ED. As a parent of two affected children, she brings a unique blend of empathy, compassion, and first-hand understanding to her work – qualities that shape every aspect of her leadership.
Diana is driven by a deep passion to support the ED community and to help individuals and families manage the daily challenges of living with the condition. She is a strong advocate, ensuring people receive the benefits, care, and support they are entitled to—both in education and in the workplace.
She oversees all aspects of the Society's work, including research initiatives and international collaboration, and is in regular contact with families and professionals alike.
Diana is widely recognised as the driving force of the ED community, leading with energy, dedication, and
heart in all that she does.
Hannah Humphrey
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Hannah is a dedicated advocate for patient-centred research, ethical practice, and accessibility. Her journey began when her daughter’s symptoms went beyond a 22q11 deletion diagnosis, leading the family to join the 100,000 Genomes Project in 2017. After three and a half years, they received a diagnosis of the ultra-rare condition TANGO2.
She now volunteers with TANGO2 UK, supports other families, and sits on ethics boards and patient participant panels as a lived experience expert—championing the inclusion of patient and family voices in every step of the process.
Jenny Carrington-Elson
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Jenny Carrington-Elson is a communications and advocacy Director, specialising in helping communities and stakeholders drive progress against the toughest challenges experienced by people living with a rare disease.
Jenny’s professional experience is focused on human-centred communications that bridge the gap between underserved communities and the health system – turning patient insight into clarity, influence, and action.
Jenny has a drive for strategic campaigning which brings together comms, advocacy and policy-shaping, and her experience has helped patient organisations, clinical leaders and industry create and launch award-winning, insight-driven programmes that drive inclusive access to good care and services.
She is passionate about rare diseases and believes that we’re heading towards a world where our scientific precision and genetic insight will mean that every condition will “become rare”. Working with small patient communities and navigating funding and resourcing challenges to help people live better is a core focus.
As part of her day job, Jenny advises innovative biotechs and the world’s largest pharmaceutical companies on how to build partnerships with rare communities in pursuit of common goals, as well as working closely with NHS bodies, patient organisations themselves, and academia.
Jess Hobart
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Jess Hobart has been working to improve the quality of life for people with mast cell diseases (MCDs) for more than thirty years. When she was diagnosed with systemic mastocytosis in her early 20s, her doctor advised her to learn to advocate for herself because most other doctors would never have heard of the condition, and that sparked a passion to help others develop those skills, too.
Jess is the chair of The UK Mastocytosis Support Group, which provides direct support for people with MCDs, advocates for their needs within the healthcare system, and fosters research into the conditions. She was also co-chair of the US non-profit now called The Mast Cell Disease Society (TMS).
She has spoken about the patient experience at medical congresses, advised drug companies on design of clinical trials, and presented to parliamentarians about challenges in health technology assessment in rare diseases.
Jess is co-author of articles in leading journals about quality of life and patient experience in people with MCDs. She is a Patient and Public Voice member of the NHS England Clinical Reference Group for Specialised Allergy and Immunology Services and a member of the National Allergy Strategy Group working group on policy,
She holds a master’s degree in public health from The Johns Hopkins University Bloomberg School of Public Health and a master’s degree in public policy from Harvard’s Kennedy School of Government as well as a BA from Swarthmore College.
Julie Benson
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Julie has been a qualified advocate within the field of health and social care for over 20 years and has 7 years’ experience working in special education. Julie is also primary carer to her sister who has cerebral palsy which has enabled her to gain lots of experience of working with professionals to ensure the best outcome and experience, from the carers’ perspective.
She joined Rett UK in July 2012, providing to support to those with Rett syndrome, parents/cares and professionals.
Kate Middleton
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Kate Middleton, CEO and Founder of the Wren Project. The Wren Project is a place where people diagnosed with autoimmune disease can talk about the emotional and social impact of their condition, through sessions of active listening with our trained volunteers.
Through focused, consistent listening support we aim to alleviate the emotional turmoil of an autoimmune diagnosis, providing tools for Wrens to successfully navigate their disease and new life.
Kate founded the Wren Project in 2020. Kate lives with lupus, diagnosed when she was 17. Kate began her career as a history teacher in London, becoming Head of History in a school in Hackney. In 2017 Kate moved to Greece where she ran an organisation supporting refugees in camps throughout the Northern region.
In 2019 Kate returned to the UK, working for the Listening Place, a charity that supports suicidal people with face-to-face listening support delivered by volunteers.
The model of support inspired Kate to create the Wren Project. The Wren Project is a place for people to feel supported, listened and valued.
Lara Bloom
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Lara Bloom is President and CEO of The Ehlers-Danlos Society, where she leads global efforts to raise awareness of rare, chronic, and invisible conditions – specializing in Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions. She spearheads international medical collaboration, research funding, education, and advocacy.
A passionate leader in patient engagement and global collaboration, Lara was appointed Academic Affiliate Professor of Practice at Penn State College of Medicine in March 2020, marking a decade of work in patient advocacy. She is widely published and a sought-after keynote speaker at conferences, policy forums, academic lectures, and corporate events.
Lara serves as Vice-Chair of the Board of the International Alliance of Patients’ Organizations (IAPO) and is a Board Member of Genetic Alliance UK.
In June 2025, she received the prestigious Made with Patients Award at the Patient Engagement Open Forum (PEOF), honoring her leadership in shaping truly patient- centered global advocacy.
She was also named a 2025 D-30 Disability List Honoree by Diversability, recognizing her as a prominent voice in the disability and rare disease space.
Lorna Pender
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Dr Lorna Pender is a patient engagement and medical affairs professional with a knack for bringing rare disease voices to the forefront, whether in the NHS wards, the European Parliament, in a publication, or a conference stage.
With over 14 years’ experience spanning acute medicine, global pharma, and biotech, she’s co-created patient programmes, championed early access initiatives, and helped shape rare disease policy.
Known for blending strategic thinking with a warm, collaborative style, Lorna is happiest when connecting communities, bringing hard truths to the forefront, sparking ideas, and making patient partnerships more than just a buzzword.
As a person with lived experience of severe alopecia; a condition that is rare to find an NHS clinical expert, Dr Pender feels very much aligned and understanding with the difficulty in the rare community in finding access to expertise and medicines and this drives her to make a difference every day in her work and in her advocacy.
Mary Collins
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Mary lives with Fibrous dysplasia, and has had 4 surgeries to date to remove excess bone growth.
Inspired by her own experiences, she has completed degrees in Neuroscience, Psychology and Diversity and Inclusion.
Mary is passionate about the patient experience for rare conditions.
Phillippa Farrant
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Phillippa became involved with rare diseases when her son was diagnosed in 1992, with Duchenne Muscular Dystrophy. This threw her into an unknown world, fighting for services, equipment etc – the normal story for most families living with a family member with a rare disease.
Phillippa became involved in the Duchenne Family Support Group, firstly as a volunteer and then as their paid support worker.
She became a trustee at MDUK and did lots of advocacy and Parliamentary meetings trying to change the system and raise awareness of these rare diseases. Over time she became involved with Genetic Alliance and served 6 years on the board as a trustee.
More recently Phillippa has been a patient representative for the Delivery Group of the England Rare Disease Framework, after her son died in 2019, she came out of the neuromuscular world and started a job as an adult support worker at Wolfram Syndrome UK, an even rarer disease.
Sailaja Maganti
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Sailaja is the Founder and Chair of the Trustee Board of Prurigo Nodularis International, the only global patient-led charity for the rare, debilitating and distressing skin condition, Prurigo Nodularis (itchy, neuro-immune, inflammatory condition). She is also a 20 year veteran of the condition herself.
She has also been a working group member of the Rare Disease Research Network, is a NICE Public Involvement Programme Expert Panel member and a patient expert on both NICE and SMC HTAs. As a Prurigo Nodularis patient expert she also acts as an advisor, consultant and partner.
Sailaja is a passionate and outspoken advocate determined to see those with a rare disease receive the care and dedicated treatments they all need and deserve, on par with patients of mainstream conditions. She wants the hard-earned insights of rare disease patients’, as well as their expertise and experience taken seriously. Sailaja is able to leverage and transfer a deep and broad skill set gained from a lengthy career in the financial services industry to her patient advocacy.
Sarita Edwards
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Sarita Edwards, MHA is the CEO & President at the E.WE Foundation, a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Syndrome) and other rare diseases.
Sarita’s son Elijah was diagnosed in utero with Full Trisomy 18 which began her efforts of advocacy and public policy.
Sarita is an award-winning advocate, global speaker, and host of the Being Rare Podcast. She provides insight on policy initiatives within her home state and across the country. Sarita has more than 20 years of professional experience in Healthcare Administration and is a candidate for her Doctorate in Health Science.
She holds a Bachelor of Science in Health Science, a Masters in Healthcare Administration, and is a nationally certified Mental Health First Aid Instructor. Sarita lives in North Alabama with her husband and three of their five children.
Scott Hutchings
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Fuelled by his daughter Sienna’s CHAMP1 diagnosis and his late father’s battle with rare leukaemia , Scott is a determined advocate.
He founded CHAMP1 UK, joined the boards of the US and EU based foundations, and now serves as a primary point of contact for the CHAMP1 community – acting as a bridge between boards, researchers, clinicians, and families.
His hands-on experience includes managing patient registries, building a research portal , creating materials to inform and support families , organising global conferences , and co-ordinating awareness days.
He joins the Patient Group Engagement Committee with the goal to help other patient groups succeed.
Sinéad James
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Sinéad James co-founded the CPA Research Foundation in 2020 after her daughter was diagnosed with Cerebral Proliferative Angiopathy (CPA), a rare and incurable brain disease.
As a trustee, she is passionate about bringing hope to families, raising awareness, and driving research that could one day lead to better treatments.
Her work is fuelled by a deep commitment to making a difference for those living with this little-known condition.
Sue Banks
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Sue is currently Secretary and Trustee of GRI-UK, an organisation she helped to found which became a Registered Charity in 2023. She is also a Family Ambassador for CUREGRIN.
She spent her professional career as a nurse and specialised in Occupational Health (working also in Health & Safety, Ergonomics and Health Education), she founded her own OH Consultancy which became a National Company.
In 2016 Sue’s grandson Evan was diagnosed with GRIN1. She has since been fundraising and leaning about GRI Disorders.
Timothy Dreyer
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Dr Timothy Dreyer (PhD) is a rare disease (sclerosteosis) patient and in 2016, as part of his PhD (University of Pretoria, South Africa), started investigating potential treatments for this ultra rare disease.
He has since continued his sclerosteosis research at the Royal Veterinary College, London, with continued support from UCB Pharma.
Timothy is also a committee member of the parent and patient led Rare Bone Disease Foundation in South Africa, where he assists with raising disease awareness and funds for patient support and research.
He often presents his rare disease research at international scientific conferences and has done interviews, television documentaries (BBC and NHK-World) and given talks at the Beacon Rare Showcase events to raise awareness of sclerosteosis.
Outside of research, Timothy is an avid reader, bit of a gamer and enjoys hiking and weekend breakfast runs on his motorcycle.
Tracey Hammond
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Tracey has been sharing her lived experience with the CAUK community since 2009, after experiencing two brainstem bleeds in her single cavernoma.
Cavernoma is a rare disease, and connecting with others who understand the challenges it brings has been incredibly important to Tracey.
She began volunteering with CAUK in 2010, and in 2019 joined the staff team. Throughout all roles, her focus has always been on supporting their members through peer-to-peer connection, direct support, and working closely with their amazing volunteers.
Tracey is responsible for managing the charity’s volunteer-delivered support services, including its helpline accessible by email and phone, peer-to-peer support, and community meet-ups. She works closely with the Charity Manager to ensure the patient voice is represented in cavernoma-related research.
Tracy Lynch
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Tracy is the main carer for her daughter, who lives with an extreme form of Wolfram Syndrome.
Her diagnosis in 2010 at the age of eight, led Tracy and her husband to start the WSUK support group, which became a registered charity in 2013.
Since then, she has been actively involved in building and running Wolfram Syndrome UK, supporting families, raising awareness, and working closely with researchers and clinicians.
WSUK is now a small team of five, but Tracy remain closely involved in day-to-day operations and patient-facing activities.
Over the past 15 years, she has had the privilege of connecting with families, researchers and healthcare professionals from around the world. Tracy brings both lived experience and practical insight to patient engagement, and is passionate about ensuring that the voices of those affected by rare conditions are heard and valued.
Rick Thompson
CEO
Likes
- Indie-rock music
- Dinosaurs
- The Wire
Favourite moment at Beacon:
Our first-ever rare disease showcase event in Birmingham will always stand out as a huge achievement, a great event and a showcase that set the tone for our work to come.
Rick joined Beacon (previously known as Findacure) as the charity’s third member of staff and first-ever Scientific Officer. His aim was to drive forward the charity’s work in drug repurposing.
Rick became CEO in 2017, and has since been involved in almost all of our projects. He drives the organisation’s growth and strategy.
Before Beacon, Rick secured a PhD in Evolutionary biology and studied moles in Cambridge’s Museum of Zoology. He has written articles, given talks and provided training across the European rare disease community. He is continually amazed by the work, knowledge and commitment of our patient group leaders.
In his free time, Rick likes to paint, read science fiction and fantasy novels, and geek out with a good board game – that is when he isn’t busy being a dad to his two small girls!
Favourite moment at Beacon:
Our first-ever rare disease showcase event in Birmingham will always stand out as a huge achievement, a great event and a showcase that set the tone for our work to come.
Likes
- Indie-rock music
- Dinosaurs
- The Wire
Mary Rose ‘MayRo’ Roberts
Chief Operating Officer
Likes
- Eurovision
- Skiing in the Alps
- Swimming in the sea
- Kayaking/Paddleboarding
- Marvel Cinematic Universe
Favourite moment at Beacon:
The Virtual Rare Disease Showcase; our first ever large-scale, multi-day virtual conference and a huge professional challenge.
Mary Rose – or MayRo as we like to call her – joined Beacon in 2016 as the charity’s first Events Officer; initially tasked with growing our workshops programme, mentoring scheme, rare disease showcase series and drug repurposing conference.
In 2019, Mary Rose became our Head of Operations; taking on responsibility for the strategy, development and delivery of Beacon’s patient group training and community building projects, as well as leading our Projects Team. She moved into the position of Chief Operating Officer in 2022 and, in addition to steering our projects, oversees Beacon’s internal processes and supports the development and well-being of our staff.
Prior to Beacon, Mary Rose attended Keele University and graduated in 2014 with a First Class Honours degree in Politics. It was during this time that she developed a passion for social causes and event management and decided to pursue a career in the charity sector. Mary Rose prides herself on her organisational skills and attention to detail, which make our projects so successful.
In her spare time, Mary Rose is an aspiring kayaker, Zumba-goer, baker, crafter and guardian to Jasper, her ginger cat.
Favourite moment at Beacon:
The Virtual Rare Disease Showcase; our first ever large-scale, multi day virtual conference and a huge professional challenge.
Likes
- Eurovision
- Skiing in the Alps
- Swimming in the sea
- Marvel Cinematic Universe
Blayne Baker
Digital Resources Manager
Likes
- Naps
- Christmas markets
- Comedians
- Halloween
Favourite moment at Beacon:
Being published in Pharmafile for her article, “Every number has a face: Are you valuing the patient voice?” and her article “Uncommon multiple sclerosis journey and the valuable impact of patient groups” in The Guardian’s Rare Diseases Campaign that was both online and in print!
Blayne joined Beacon in July 2020 as our Marketing and Engagement Manager. In June 2023, she moved into her new role as Digital Resources Manager where she began growing The Resources Hub and managing our volunteers!
Blayne is responsible for:
- Volunteer and pro bono management
- Developing and delivering our on-demand and online resources
- The Resources Hub website and promotion
Blayne adores writing and making connections with leaders in the rare disease community. She prides herself on writing concisely, clearly and accessibly so that everyone can enjoy our resources. She has now made the switch from adding the American “z” to adding the British “s” to words.
Blayne graduated a semester early from Clarkson University in 2016 with a Bachelor of Science in Communications and a minor in Business. She does not miss the constant, freezing cold snow up in Potsdam, NY!
Outside of work, you can find her making memories with her long-haired weenie dog, Spooky, watching The Great British Bake Off and Facetiming her family.
Favourite moment at Beacon:
Being published in Pharmafile for her article, “Every number has a face: Are you valuing the patient voice?”
Likes
- Naps
- Christmas markets
- Comedians
Hannah Harvey
Projects Manager
Likes
- Yoga
- Drum and bass
- Paddle boarding
Favourite moment at Beacon:
The 2021 Drug Repurposing Conference. It was her first major event at Beacon and was a total success!
Hannah joined Beacon in February 2021 as our Projects Administrator and has since moved into the position of Projects Manager. She graduated with a History Degree from the University of Leeds in 2017, and before joining Beacon, she was living in Canada skiing every day and working in events.
Hannah supports the management and delivery of Beacon’s events and projects and leads a number of our core activities, including the Patient Group Mentoring Programme, The Student Voice Prize, our masterclasses and in-person workshops.
Hannah sought out a career in the charity sector so she could have a positive impact on peoples lives and especially enjoys the projects where she works directly with the rare disease community. She loves the variation in her role at Beacon and is excited to be a part of the charity as it continues to grow and find new and innovative ways to support the rare community.
Outside of work, you can usually find her out in nature where she enjoys hiking, swimming and paddle boarding!
Favourite moment at Beacon:
The 2021 Drug Repurposing Conference. It was her first major event at Beacon and was a total success!
Likes
- Yoga
- Drum and bass
- Paddle boarding
Faith Walpole
Senior Fundraising Officer
Likes
- The beach
- Flowers
- Cheese boards
- Pistachios
Favourite moment at Beacon:
Attending the Drug Repurposing for Rare Diseases Conference 2022. Particularly the evening meal with the whole team, it was the first opportunity to spend time with everyone
Faith joined Beacon in September 2022 in the role of Fundraising Officer. After graduating with a degree in Human Geography, she developed an aspiration of working towards health equity.
Faith is predominantly responsible for seeking and maintaining funding for Beacon’s work, monitoring the success and impact of our projects, and creating effective fundraising proposals to harness the support from trust and foundations and potential corporate partners.
Being a fresh–faced graduate, Faith is looking forward to putting her skills towards the benefit of the rare disease community. She has always had a passion for working in charity, particularly within the healthcare sector, so is excited to meet an abundance of new people in her role.
Outside of work, you will usually find Faith somewhere in nature, whether that be at the beach, in the garden, or wandering around a nature reserve.
Favourite moment at Beacon:
Attending the Drug Repurposing for Rare Diseases Conference 2022. Particularly theevening mealwith the whole team, it was the first opportunity to spend time with everyone.
Likes
- The beach
- Flowers
- Cheese boards
- Pistachios
William May
Senior Operations Officer
Likes
- Drum and bass
- Computer games
- Military history
- Manchester United
Favourite moment at Beacon:
My favourite moment so far has been organising our Christmas party. All the new staff, including me, had settled in and it was one of the rare times that everyone was together. Everyone enjoyed the food and, more importantly, remembered their Secret Santa presents and all of them were a hit.
Will joined Beacon in October 2022, initally hired as our Administrative Officer, having graduated with a 2:1 in military history from the University of Kent in 2021.
Will supports the day-to-day running of the charity, supports the CEO and Chief Operating Officer in their roles and helps ensure a smooth delivery of the new EU-funded drug repurposing project REMEDi4ALL. He is looking forward to learning how Beacon operates and how he can assist with the work we do within the rare disease community.
In his spare time, Will enjoys going to the gym, watching Man Utd again after years of disappointment and going to raves with his mates and girlfriend on the weekends.
Favourite moment at Beacon:
My favourite moment so far has been organising our Christmas party. All the new staff, including me, had settled in and it was one of the rare times that everyone was together. Everyone enjoyed the food and, more importantly, remembered their Secret Santa presents and all of them were a hit.
Likes
- Computer games
- Drum and bass
- Military history
- Manchester United
Eve Hewitt
Scientific Projects Manager
Likes
- Star Wars
- Candles
- Cooking
- DIY
Favourite moment at Beacon:
Attending the Drug Repurposing conference in October 2022. An exciting and informative introduction to what would soon be colleagues and friends in the rare disease and drug repurposing community.
Eve joined Beacon in October 2022 as Senior Scientific Project Officer and came on board to support Beacon’s role in the ambitious, EU-funded drug repurposing initiative – REMEDi4ALL.
Eve works with clinicians, researchers, patients and other stakeholders to help add insight into the value of patient-centred research and decision making in clinical research. As part of REMEDi4ALL Beacon will help create an accessible platform to educate all interested in the multiple, often complex steps involved in drug repurposing. Eve is currently undertaking research into how best to deliver this education to a wide audience and will then work to make this happen.
Before coming to Beacon, Eve worked as a Clinical Trials Practitioner in gynecological cancer. This gave her great insight into both the impact of clinical trials on the day-to-day life of patients and the huge requirement of brain power, data and collaboration behind the scenes to ensure the trial runs smoothly.
Outside of work, you will find Eve doing something with her hands –be it upcycling old furniture, cooking, working in the garden or (especially in colder months) indoors on the sofa with a coffee and a sewing project.
Favourite moment at Beacon:
Attending the Drug Repurposing conference in October 2022. An exciting and informative introduction to what would soon be colleagues and friends in the rare disease and drug repurposing community.
Likes
- Star Wars
- Candles
- Cooking
- DIY
Niamh Antrobus
Senior Communications Officer
Likes
- Travelling
- Live music
- Theatre shows
- The beach
Favourite moment at Beacon:
My first Beacon event was the Rare Disease Showcase 2023 in Cambridge! It was great to meet the rest of the Beacon team, and learn more about the amazing rare disease community.
Niamh joined Beacon in 2023. As our communications officer, Niamh is responsible for the charity’s external communications, including running our social media channels, newsletters and website.
Before working at Beacon, Niamh completed a Level 3 Digital Marketing Apprenticeship, this gave her the opportunity to gain skills and knowledge in social media content creation and management, SEO, website development and email marketing.
Niamh was given an introduction into the charity sector from doing a work experience placement at BBC Children in Need in the Corporate Partners and Marketing team.
Outside of work Niamh enjoys travelling, going to theatre shows and watching live music with her friends and family.
Favourite moment at Beacon:
My first Beacon event was the Rare Disease Showcase 2023 in Cambridge! It was great to meet the rest of the Beacon team, and learn more about the amazing rare disease community.
Likes
- Traveling
- Live music
- Theatre shows
- The beach
Emma Damian-Grint
Fundraising Manager
Likes
- Dancing
- Festivals
- Posh bakeries
- Assault courses
Favourite moment at Beacon:
The welcome given by the Beacon staff team!
Emma joined Beacon in September 2023 to manage income for the charity and support communications.
Her aim is to maintain and develop partnerships with businesses and grant makers to ensure the charity continues to deliver exceptional services and support to the rare disease patient community.
Emma has worked across the charity sector in fundraising and communications following her time at university studying journalism. After working in the arts and higher education, she spent 5 years at the Tuberous Sclerosis Association and 2 years at Genetic Alliance UK.
In her free time Emma enjoys yoga, gigs and stand-up comedy, when she is not chasing around her small chaotic little boys.
Favourite moment at Beacon:
The welcome given by the Beacon staff team!
Likes
- Dancing
- Festivals
- Posh bakeries
- Assault courses
Gabriel Ortega Toledo
Senior Projects Officer
Likes
- Being active (working out, swimming, surfing)
- Dancing
- Cooking
- Socialising
- Learning about psychology, our brains and human relationships!
Favourite moment at Beacon:
Because I’ve only recently started, I don’t have a lot of experiences yet! However, my favourite moment was when I opened my work laptop for the first time, and I saw the laptop’s wallpaper. It was a landscape from the Canary Islands (where I’m from)! This is a little detail that meant a lot, and I will always remember it!
Gabriel joined Beacon in 2024 after graduating in Immunology from the University of Edinburgh. At Beacon, Gabriel supports the production and development of our educational resources for patient groups, acts as a key liaison between collaborators and the community, and provides support in a range of different projects, especially those with a scientific relevance, like REMEDI4ALL.
At Edinburgh, Gabriel gained a thorough understanding in genetics and immunology, which are the base of many rare diseases. After university, Gabriel joined Scleroderma United, a charity that works to raise awareness and connect people living with Scleroderma, a rare autoimmune disease.
At the same time, he volunteered as a medical writer at Klarity, where he produced comprehensive articles
about disease management to help people understand diseases better.
Outside of work, Gabriel enjoys spending time with friends, keeping active, and cooking!
Favourite moment at Beacon:
Because I’ve only recently started, I don’t have a lot of experiences yet! However, my favourite moment was when I opened my work laptop for the first time, and I saw the laptop’s wallpaper. It was a landscape from the Canary Islands (where I’m from)! This is a little detail that meant a lot, and I will always remember it!
Likes
- Being active (working out, swimming, surfing)
- Dancing
- Cooking
- Socialising
- Learning about psychology, our brains and human relationships!
Elizabeth Proctor
Senior Events Officer
Likes
- Rock climbing
- Yoga
- Forests
Favourite moment at Beacon:
Attending and assisting with the organisation and delivery of the MCDS-Therapy final conference in Newcastle, 2024. It was an eye-opening insight into the clinical trial and a great opportunity to spend time with the team and consortium.
Elizabeth joined Beacon in May 2024 in the role of Events Officer. In 2023, she graduated with a degree in Psychology and Cognitive Neuroscience from the University of Nottingham. She developed an interest in rare diseases after completing a research project investigating the underlying neural mechanisms of a rare type of dementia.
Elizabeth’s role is to assist with the planning and delivery of Beacon’s online and in-person events. She serves as a point of contact for beneficiaries, collaborators and external partners to ensure smooth delivery of Beacon’s projects. She also collaborates with the Fundraising and Communications Team, supporting with the collection and reporting of impact data and maintaining the patient group database.
Outside of work, she can usually be found rock climbing with her partner, taking a yoga class, or catching up with family and friends.
Favourite moment at Beacon:
Attending and assisting with the organisation and delivery of the MCDS-Therapy final conference in Newcastle, 2024. It was an eye-opening insight into the clinical trial and a great opportunity to spend time with the team and consortium.
Likes
- Rock climbing
- Yoga
- Forests
Jeffery SirMoo
Head of Advocowcy
Likes
- Showing off his dance mooves
- Grazing awareness of rare diseases
- Cowllaborations
- Mootown music
Favourite mooment at Beacon:
Attending the Cambridge Rare Disease Showcase in July was a great mooment! I loved having my photo taken with a lot of people across the rare disease community, it made me feel like a moovie star. I felt like I had really earned my spots!
Jeffery joined the charity in Summer 2021 after Beacon – then named Findacure – entered the Cambridge Independent‘s ‘design a mini-moo’ competition.
The competition was run in conjuction with Cows about Cambridge, a free public art trail of 90 locally designed Cow sculptures.
The Cambridge Independent called upon local community groups and organisations to submit a design for a ‘mini moo’, with the winner being awarded their very own mini moo!
We tasked our Senior Projects Officer, Phil, to create a design for the mini moo and, low and behold, we won the competition! Read our article in the Cambridge Independent to find out more.
Favourite mooment at Beacon:
Attending the Cambridge Rare Disease Showcase in July was a great mooment! I loved having my photo taken with a lot of people across the rare disease community, it made me feel like a moovie star. I felt like I had really earned my spots!
Likes
- Showing off his dance mooves
- Grazing awareness of rare diseases
- Cowllaborations
- Mootown music
Megan Burley
Senior Scientific Projects Officer
Likes
-
Walking
-
Cooking
-
Cuddling her animals (three cats & one dog)
Favourite mooment at Beacon:
Attending and helping run the Academic Bootcamp in March 2025 – an event we developed to help researchers progress their own drug repurposing projects. I got involved in helping develop this project when I first joined Beacon and it was so nice to see it progress from concept to reality. I managed to meet some amazing researchers and academics who are interested in drug repurposing and I also met some of the REMEDi4ALL team in person.
Megan joined Beacon in January 2025 as a Senior Scientific Projects Officer. She supports two key projects, the European-wide drug repurposing platform, REMEDi4ALL, and the LifeArc Translational Centres for Rare Disease Hub.
Across these projects, Megan is involved in writing and reviewing content for the REMEDi4ALL Digital Repurposing Academy, assisting with planning and delivery of webinars and in-person training events, and collaborating with researchers, clinicians, patients and other stakeholders across the UK and Europe.
Before joining Beacon, Megan completed her PhD at the University of Birmingham. She then went on to work at the Francis Crick Institute as a postdoctoral researcher, carrying out lab based research whilst also getting involved in public engagement and outreach activities.
Outside of work, Megan spends most of her time in the countryside with Omelette, her golden retriever.
Favourite mooment at Beacon:
Attending the Cambridge Rare Disease Showcase in July was a great mooment! I loved having my photo taken with a lot of people across the rare disease community, it made me feel like a moovie star. I felt like I had really earned my spots!
Likes
- Showing off his dance mooves
- Grazing awareness of rare diseases
- Cowllaborations
- Mootown music