Meet the team

Our work makes a lifechanging difference to the rare community. This is why we pride ourselves on delivering highquality trainings, events and projects.

We are proud to say that our team has over 20 years of combined experience working in this space.

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

CEO
Rick joined Beacon in 2015 as the charity’s first Scientific Officer, and became CEO in 2017. He drives the organisation's vision, growth and strategy, as well as leading the charity's drug repurposing and scientific work.

Mary Rose (MayRo) Roberts

Chief Operating Officer
Mary Rose (MayRo) joined Beacon in 2016. As COO, she oversees the strategy, delivery and development of Beacon’s core activities, heads up our Projects Team and plays a key role in the day-to-day running of the charity.

Blayne Baker

Digital Resources Manager
Blayne joined Beacon in 2020, initially as our Marketing and Engagement Manager. In 2023, Blayne moved into her new role where she is responsible for developing and delivering our on-demand and online resources.

Hannah Harvey

Projects Manager
Hannah joined Beacon in 2021 and works within the Projects Team. She leads many of our core activities, including the Patient Group Mentoring Programme, The Student Voice Prize and masterclasses.

Eve Scott

Scientific Projects Manager
Eve joined Beacon in 2022, having previously worked within the NHS. As part of REMEDi4ALL, Eve is responsible for driving patient engagement in drug repurposing projects, as well as educating the repurposing community.

Faith Walpole

Senior Fundraising Officer
Faith joined Beacon in 2022 after graduating from the University of East Anglia with a degree in geography. Faith is responsible for seeking funding for Beacon's work and creating effective proposals to harness support from partners.

William May

Administrative Officer
Will joined Beacon in 2022 and helps ensure the successful day-to-day running of the charity. He provides operational support to the CEO, COO and wider organisation and assists delivery of the REMEDi4ALL programme.

Niamh Antrobus

Communications Officer
Niamh joined Beacon in 2023 and oversees the charity's day-to-day communications, including our social media channels, website and newsletters and also coordinates our weekly blog and guest blogs.

Emma Damian-Grint

Fundraising Manager
Emma joined Beacon in 2023 and oversees the charity's fundraising activities. She develops partnerships with businesses and grant makers to ensure the charity continues to deliver exceptional services and support to the rare disease patient community.
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Abby Stock-Duerdoth

Scientific Projects Officer
Abby joined Beacon in 2023 and as part of the REMEDi4ALL project, Abby supports the delivery and development of the repurposing training programme. They also support the patient centricity of the REMEDi4ALL project by helping develop best practices and joining in with engagement activities.

Jeffery SirMoo

Head of Advocowcy
Jeffery (Jeff) joined the charity in 2021 after Beacon - then Findacure - won the Cambridge Independent's 'design a mini moo' competition, run in conjunction with the Cows about Cambridge art trail.

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.

Nick Sireau

Chair and Co-founder

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Dr Nicolas Sireau is the CEO and Chair of Trustees at the AKU Society, a patient group that helps people with AKU (short for alkaptonuria), a rare genetic disease affecting both his children.

Previously, Nick was Patient Engagement Director in Oncology at AstraZeneca and beforehand, was the CEO of SolarAid.

He is a fellow of the Ashoka Fellowship of Social Entrepreneurs and has a PhD in the social psychology of social movements. He is the editor of ‘Rare Diseases: Challenges and Opportunities for Social Entrepreneurs’ (Greenleaf 2013).

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.

Sophie Costello

 

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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.

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

We want to incorporate the patient group voice into our work. Our Patient Group Engagement Committee was created out of this desire in 2017.

Today, it stands as a vital advisory board that helps us to:

  • 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 2021 – 2023 Patient Group Engagement Committee now! 

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Chris Bedford-Gay 

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Chris is currently Chief Technology Officer and Director of a small software development company specialising in online skills testing and personality profiles for recruitment and team management.

Alongside his day job he also founded FOP Friends in 2012, a charity supporting families and research into his son Oliver’s condition Fibrodysplasia Ossificans Progressiva (FOP) – a condition only 1 in every 1,000,000 suffer from. Chris does this entirely voluntarily.

He is also a board member of the International FOP Association, based in the USA and chairs the International President Council for FOP, a committee that brings together all the national FOP organisations from around the world to work together towards a treatment and ultimately a cure for FOP.

Chris is also a long standing member of Manchester Round Table, a social charitable organisation, which raises money for local good causes through annual events such as firework displays, beer festivals and Santa sleighs, to name only a few.

Finally, he is dad to three boys who, at time of writing (August 2021), are Harry (8), Leo (11), and Oliver who has FOP (13).

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Christine Mutena 

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Christine Mutena is an immensely passionate advocate for rare diseases and special needs in Kenya and globally. These causes are deeply personal to her being a mother of two children, both of whom have non-related rare genetic conditions.

Christine is the founder of Step by Stones association, an organization that leverages social media platforms to offer support to its community of special needs parents, caregivers and psycho-social support specialists.

Christine is also the co-founder of Rare Disorders Kenya, a patient-led organisation that seeks to amplify the unmet needs of the rare diseases community to policy makers. They mark Rare Disease Day annually by hosting a well-publicised event that is centred on patients narrating first-hand their rare disease journey.

Christine also dedicates her time to helping drive forward research efforts of rare diseases. She serves as the International Ambassador (Africa) for the Chromosome 18 Registry and Research Society as well as undertaking a project with Cambridge Africa Alborada Fund under the International Sustainable Partnership in Inclusive Research & Education (INSPIRE) initiative.

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Craig Mitchell 

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Craig is currently the Chief Operating Officer of Unique – the charity providing support and information to those affected by rare chromosome and gene disorders and their families.

Craig oversees Unique’s fundraising, administration and infrastructure; supporting and enabling the frontline team to deliver services to families and professionals.

His background is in HR, operations management and communications. Prior to joining Unique, Craig was a member of the charity as his eldest daughter has a rare chromosome disorder.

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Francesca Wicks 

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Coming soon!

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Laurence Woollard 

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Laurence Woollard is founder and director of On The Pulse – an independent, strategic consultancy providing specialist insight to UK and global healthcare providers on the development and rollout of patient activation campaigns in haemophilia and rare diseases.

Laurence has extensive patient advocacy experience, having advised on and implemented a broad scope of community awareness, research and educational initiatives for commercial partners and third-sector organisations. He has published thought leadership articles across various platforms and has authored several manuscripts in international, peer-reviewed journals. Laurence’s particular focus and expertise with On The Pulse is youth engagement and empowerment to both accelerate and make more effective the transition process and support life-affirming self-management.

Laurence is highly driven by his own journey and challenges of living with severe haemophilia – a rare bleeding disorder – and the impact on the family dynamic, to campaign for and effect real change in improvements to quality of life for his peers.

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Mandy Sellars 

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Mandy was born with an extremely rare overgrowth condition in her lower limbs. At two she was misdiagnosed with lymphodema & at seven amputation was suggested. Despite physical limitations, Mandy had a happy childhood and in her twenties gained a degree in psychology. She later qualified as a counsellor where she volunteered within the NHS, and a homeless charity.

During her thirties her mobility began to deteriorate. She suffered a spinal stroke, paralysis, MRSA, a number of severe infections lasting many years, leading eight years later to an amputation of her left leg. Mandy decided she needed to find out more about my rare condition. Her initial search led to Proteus syndrome but was quickly ruled out. In 2012 after appearing on a number of tv documentaries, she met Professor Semple & Dr Parker at Addenbrookes in Cambridge. Through DNA sequencing she was the first to be found with her particular mutation in the PIK3CA gene.
The condition is now known as PROS (PIK3CA Related Overgrowth Spectrum), an umbrella term for a number of conditions that sit within PROS.

Soon after, they discovered that Sirolimus (an anti-rejection drug used for kidney transplant patients) could possibly stop her overgrowth & even shrink her affected areas. She had great success losing five stone in weight from her legs & foot. In 2019 Sirolimus stopped working & her overgrowth still continues to grow.

During this time she set up a registered charity called GoPI3Ks (Genetic Overgrowth PI3K Support) to help those living with PROS. They provide financial grants to help with the extra costs associated with living with PROS, provide research information, contact with doctors, help create a social network for families/patients to connect with others, as well as running family weekends. Being rare, life is constantly changing & Mandy is hoping to try the medication Alpelisib; as well as being used to treat breast cancer, there has also been great success treating those living with PROS.

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Michelle Conway 

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Michelle Conway is a freelance consultant and the founder of CRD Consulting Ltd. Her work spans across Industry and the third sector to support improved care and access to effective treatments for rare conditions. Originally trained as a nurse, Michelle has pursued a successful career spanning two decades in the pharmaceutical industry, spending a significant proportion of this time developing strategies to create improved market access for ultra-orphan medicines.

Recently graduating with a Master’s in Public Policy, Michelle combines her knowledge and experience with a passion to remove barriers to effective care and treatment for those living with a rare condition by influencing policy to change the landscape. Using her excellent networking skills to engage key stakeholders from across industry, government and the third sector on priorities important to the rare disease community.

Approaching her work with experience spanning many dimensions, Michelle is driven by a desire to improve the lives of those who face a daily struggle by helping remove barriers to effective care and treatment wherever she can.

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Mileva Repasky 

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Mileva Repasky is the Chief Patient and Development Officer at the Castleman Disease Collaborative Network and (most importantly) mother to one of the youngest Castleman Disease patients, Katie. She is passionate about connecting patients and loved ones, fundraising, patient advocacy, and raising awareness.

She continues to advance the CDCN’s mission by collaborating with the patient and loved one community, physicians, researchers, and our partners, to advance our life saving mission.

She is particularly interested in finding new and innovative ways to raise awareness of this disease and other rare disease. Mileva graduated with a BS in Psychology and completed her Masters in Clinical Psychology in 2018.

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Silvia Cerolini 

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Silvia Cerolini is the mother of 7 year-old Vicky. Vicky is affected by Leber Congenital Amaurosis (LCA), a rare inherited disease causing progressive sight loss in children.

Since the diagnosis ~ 4 years ago, Silvia has been actively advocating and fundraising to support research into inherited retinal dystrophies. Her campaign, Through Vicky’s Eyes, has raised ~1 Million $ to advance research on LCA. It led to the publication of 4 scientific papers and the advancement of multiple therapeutics approaches from drug repurposing to gene therapy.

Passionate about connecting people, she now coordinates a group of over 100 families with Vicky’s condition from all over the world. She has been the driving force behind the first ever Global Patient Day in 2018 and the first ever Global Scientific Workshop on Vicky’s condition in 2019. The workshop is considered a best in class example of patient involvement in research and now reapplied by other patient organizations. Her efforts have been featured on TV and Press all over Europe.

Originally Italian, Silvia lives with her family in London where she works as Global Director of Analytics & Insights at Procter & Gamble.

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Sue Routledge 

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Sue is the chair of Pitt Hopkins UK, a charity she helped found in 2016 after her middle son was diagnosed in 2007 with Pitt-Hopkins syndrome (PTHS) as part of a European research project.

She is also a moderator of the international and UK Google groups, a co-moderator of an international Facebook group and of the PTHS RareConnect group.

She has been the International Representative for the Dutch Pitt-Hopkins syndroom charity since 2009, when it was founded, and is also a patient advocate and on the patient council for the ERN ITHACA.

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Suzie Morris 

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Suzanne was diagnosed with Aplastic Anemia in 1970, Paroxysmal Nocturnal Haemoglobinuria (PNH) was diagnosed over the following 2 years.
 
51 years later Suzanne has been one of the original test patients for Euculzimab a revolutionary drug manufactured originally for inflammatory diseases (rheumatoid arthritis, lupus, etc. but was repurposed with great success to become a first-in-class complement inhibitor in the rare disease space. Suzanne has now been receiving Eucilzimab for approximately 20 years.
 
Professionally Suzanne has worked within the Travel Industry for over 30 years, she has visited and worked in many countries around the world. PNH has not defined who Suzanne is, or how she has lived her life, she has defined PNH to fit in with her.
 
Having worked in the commercial world she can contribute and offer a lot in supporting key stakeholders and drivers within the treatment cycle, along with offering great insight into the positives vs negatives of living with a rare disease.
 
Personally, Suzanne lives in Epsom with her long suffering husband Gary and their two dogs Dolly and Tuppence.
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Tony Thornburn 

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Tony served 35-years in the Armed Forces, during which time he benefited from a wide variety of appointments and roles, before becoming a Lecturer in Systems Engineering at Cranfield University, where he remains a Visiting Fellow.

He is currently involved with the STEM initiative in schools, the British Standards Institute, a Systems Thinking Special Interest Group and a Human Factors Integration Working Group. A Fellow of both the Chartered Management Institute and the Institute of Leadership and Management, he is an associate member of the RSM, RCGP and BSR.

Tony became a member of Behçet’s UK in 2006 when his daughter, by chance, was eventually diagnosed with the condition. He feels immensely privileged to have been appointed Chair in 2017 and sought to build upon all the hard work that went before.

This is being achieved armed with knowledge provided particularly by Beacon and Genetic Alliance UK to set the foundations firm for its future; establishing a Patient Registry, Natural History Study, getting into the genome space, together with research and drug development or repurposing.

He is passionate about improving the lot of rare disease patients, their families, carers and supporters and all that should be in place to support them during their difficult journey; principally by trying to encourage everyone to be more truly collegiate – ‘a real systems challenge’.