Meet the team

 

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.

Read more

Say hello to the Beacon team!

Our team prides itself on delivering high-quality training, events and projects. We are proud to say that our team has over 18 years of combined experience working in this space. 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
Read our team bios to get to know us better and email us to say hello!

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 Thompson

CEO

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!

Mary Rose Roberts

Head of Operations

Likes:

  • Eurovision
  • Skiing in the Alps
  • Swimming in the sea
  • Marvel Cinematic Univerise

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.

She became Head of Operations in 2019 and now oversees the strategy, development and delivery of Beacon’s patient group training and community building projects. Mary Rose heads up our Projects Team and plays a key role in the day-to-day running of the organisation.

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, origami dabbler and guardian to Jasper, her ginger cat.

Laura Thompson-Harper

Fundraising Manager

Likes:

  • Good food
  • Dancing
  • Festivals

Favourite moment at Beacon:

Our Leadership Workshop – this was the first face to face workshop Laura attended and it still warms her heart at how passionate the day made her about what Beacon do. Spending the day with patient group leaders, feeling the empowering energy and listening to all the amazing work that is happening in our community was magical. It was quite early on in Laura’s time at Findacure and was the first event that inspired her continued love for how incredible our rare community is.

Laura joined Beacon in November 2019 as our Fundraising Manager. She has worked in the charity sector for over 12 years and loves working with the community.

Laura is responsible for:

  • Funding through Trusts and Foundations
  • Developing corporate relationships
  • Fundraising through corporate partners
  • Impact and reporting
  • Developing our fundraising strategy

Laura enjoys working with people and developing relationships. She enjoys writing and developing new project ideas. Over the years she has worked coordinating projects, managing volunteers and fundraising for a wide range of community development projects. Laura brings all this experience to her role.

Laura has a First Class Honours Degree in Women’s Health from Edge Hill University and lived in Manchester for seven years during this time. Although she loves living down south now, she misses Manchester a lot and still spends a lot of time there.

Outside of work Laura is a mum to her beautiful son Ethan, does sound healing as a Gong Master Practitioner and spends as much time as she can with her family & friends.

Philippa Norman

Projects Coordinator

Likes:

  • Charity shopping
  • Chocolate
  • Patting any and every cat she meets
  • Music- listening to it and singing along
  • Being in or near water

Favourite moment at Beacon:

Winning Jeffrey Sirmoo the mini moo through the Cambridge Independents Cows around Cambridge competition.

Philippa (Phil) joined Beacon in 2019 as our Projects Officer and has since taken on the title of Projects Coordinator. Phil has a first class honours degree in History from Newcastle University and came to Findacure through the CharityWorks graduate scheme after she decided she wanted to work in the charity sector to put helping people at the heart of her everyday job.

Philippa is involved in all the projects at Beacon and is responsible for:

  • Managing a proportion of the mentoring programme cohort
  • Managing the Student Voice Prize
  • Managing the Rarely Heard podcast
  • Planning and delivering workshops
  • Assisting in the delivery of the new online resources hub

Philippa loves seeing projects come together from the idea to delivery stages and seeing the impact that the training Beacon organises can have on individuals in the rare community. She prides herself on her ability to work adeptly and competently on a range of different projects and really enjoys being able to work with different people and build new connections.

Outside of work you can find her singing (well anytime really), dancing, swimming, paddleboarding or chewing people’s ears off about slow fashion and the environment.

Hannah Harvey

Projects Officer 

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. 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 Beacons events and projects with a particular focus on the Drug Repurposing Conference and Rare Disease Showcase Series. She is also responsible for Beacon’s RareChat project and manages a cohort on the Patient Group Mentoring Programme.

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!

Freya Turner

Design Intern

Likes:

  • British comedy
  • Cats
  • The William Morris quote – “Have nothing in your houses that you do not know to be useful, or believe to be beautiful.”

Favourite moment at Beacon:

Being part of one of Beacon’s Rare Chats way back when she started in August 2021 and getting the chance to see first-hand how much impact patient groups make.

Freya joined Beacon in August 2021 as our Design Intern in partnership with Costello Medical who are also based in Cambridge. This is her first design position since retraining in graphic design after working in communications in the non-profit sector.

Freya is responsible for:

  • Website design
  • Wider digital design eg. Social media materials
  • Print design eg. Leaflets
  • Merchandise design
  • Making sure we rebrand effectively

Freya enjoys making information clear and enjoyable to engage with, whether it be in printed or digital form. This has been shaped by her degree in English literature from UEA and background in communications in community and campaign-oriented organisations.

Outside of work you can find Freya listening to music, singing, visiting the cinema, reading, and trying new food and coffee.

Blayne Baker

Marketing & Engagement Manager

Likes:

  • Naps
  • Christmas markets
  • Comedians

Favourite moment at Beacon:

Being published in Pharmafile for her article, “Every number has a face: Are you valuing the patient voice?”

Blayne joined Beacon in July 2020 as our Marketing and Engagement Manager. She came from a digital marketing background and has always dreamed of working for a charity.

Blayne is responsible for:

  • Social media and website
  • Press
  • Newsletters
  • Patient stories
  • News and blogs
  • MCDS-Therapy

Blayne loves writing, and thoroughly enjoys being creative with our social media, newsletters, blogs and external communications. She prides herself on writing concisely, clearly and accessibly so that everyone can enjoy our content. 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 dancing around the kitchen to oldies music, watching The Great British Bake Off and Facetiming her family.

Sophia Rodrigues

Fundraising Officer

Likes:

  • Lemon and ginger tea
  • Seals
  • Catalan music

Favourite moment at Beacon:

Meeting the whole team over a virtual take-away. Everyone was so friendly.

Sophia joined Beacon in January 2022 in the role of Fundraising Officer. After graduating with a degree in Biology, she worked with a variety of non-profit organisations before coming to Beacon.

Sophia is responsible for:

  • Finding and maintaining funding for Beacon’s projects
  • Monitoring the success of projects
  • Creating fundraising proposals
  • Connecting with potential funders and supporters

Sophia has always been interested in charity work. In particular, she cares about ensuring that funding is used effectively, to have the greatest positive impact to reach as many people as possible. As a former biologist, she is also passionate about demystifying scientific and healthcare information so that it is easily accessible to the public and help is available to those who need it most.

In addition to fundraising, Sophia loves water sports. Outside of work, she will most likely be in a swimming pool somewhere. Alternatively, she may be curled up in bed reading a book or recovering from the aforementioned swim session or water polo match.

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.

We believe that our work is making a life-changing difference to the rare community. It is why our team prides itself on delivering high-quality trainings, events and projects. We are proud to say that our team has over 18 years of combined experience working in this space.

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.

Read our team bios to get to know us better and email us to say hello!

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!

Philippa Norman

Projects Coordinator

Likes:

  • Charity shopping
  • Chocolate
  • Patting any and every cat she meets
  • Music
  • Being in or near water

 

Favourite moment at Beacon:

Winning Jeffrey Sirmoo the mini moo through the Cambridge Independents Cows around Cambridge competition.

Philippa (Phil) joined Beacon in 2019 as our Projects Officer and has since taken on the title of Projects Coordinator. She studied History at Newcastle University and came to Findacure through the CharityWorks graduate scheme after she decided she wanted to work in the charity sector to put helping people at the heart of her everyday job.

Philippa is responsible for:

  • Managing a proportion of the mentoring programme cohort
  • Managing the Student Voice Prize
  • Managing the Rarely Heard podcast
  • Planning and delivering workshops
  • Assisting in the delivery of the new online resources hub

Philippa loves seeing projects come together from the idea to delivery stages and seeing the impact that the training Findacure organises can have on individuals in the rare community. She prides herself on her ability to work adeptly and competently on a range of different projects and really enjoys being able to work with different people and build new connections.

Outside of work you can find her singing (well anytime really), dancing, swimming, paddleboarding or chewing people’s ears off about slow fashion and the environment.

Laura Thompson-Harper

Fundraising Manager

Likes:

  • Good food
  • Dancing
  • Festivals

Favourite moment at Beacon:

Our Leadership Workshop – this was the first face to face workshop Laura attended and it still warms her heart at how passionate the day made her about what Beacon do. Spending the day with patient group leaders, feeling the empowering energy and listening to all the amazing work that is happening in our community was magical. It was quite early on in Laura’s time at Findacure and was the first event that inspired her continued love for how incredible our rare community is.

Laura joined Beacon in November 2019 as our Fundraising Manager. She has worked in the charity sector for over 12 years and loves working with the community.

Laura is responsible for:

  • Funding through Trusts and Foundations
  • Developing corporate relationships
  • Fundraising through corporate partners
  • Impact and reporting
  • Developing our fundraising strategy

Laura enjoys working with people and developing relationships. She enjoys writing and developing new project ideas. Over the years she has worked coordinating projects, managing volunteers and fundraising for a wide range of community development projects. Laura brings all this experience to her role.

Laura has a First Class Honours Degree in Women’s Health from Edge Hill University and lived in Manchester for seven years during this time. Although she loves living down south now, she misses Manchester a lot and still spends a lot of time there.

Outside of work Laura is a mum to her beautiful son Ethan, does sound healing as a Gong Master Practitioner and spends as much time as she can with her family & friends.

Hannah Harvey

Projects Officer 

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. 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 Beacons events and projects with a particular focus on the Drug Repurposing Conference and Rare Disease Showcase Series. She is also responsible for Beacon’s RareChat project and manages a cohort on the Patient Group Mentoring Programme.

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!

Freya Turner

Design Intern

Likes:

  • British comedy
  • Cats
  • The William Morris quote – “Have nothing in your houses that you do not know to be useful, or believe to be beautiful.”

 

Favourite moment at Beacon:

Being part of one of Beacon’s Rare Chats way back when she started in August 2021 and getting the chance to see first-hand how much impact patient groups make.

Freya joined Beacon in August 2021 as our Design Intern in partnership with Costello Medical who are also based in Cambridge. This is her first design position since retraining in graphic design after working in communications in the non-profit sector.

Freya is responsible for:

  • Website design
  • Wider digital design eg. Social media materials
  • Print design eg. Leaflets
  • Merchandise design
  • Making sure we rebrand effectively

Freya enjoys making information clear and enjoyable to engage with, whether it be in printed or digital form. This has been shaped by her degree in English literature from UEA and background in communications in community and campaign-oriented organisations.

Outside of work you can find Freya listening to music, singing, visiting the cinema, reading, and trying new food and coffee.

Blayne Baker

Marketing & Engagement Manager

Likes:

  • Naps
  • Christmas markets
  • Comedians

Favourite moment at Beacon:

Being published in Pharmafile for her article, “Every number has a face: Are you valuing the patient voice?”

Blayne joined Beacon in July 2020 as our Marketing and Engagement Manager. She came from a digital marketing background and has always dreamed of working for a charity.

Blayne is responsible for:

  • Social media and website
  • Press
  • Newsletters
  • Patient stories
  • News and blogs
  • MCDS-Therapy

Blayne loves writing, and thoroughly enjoys being creative with our social media, newsletters, blogs and external communications. She prides herself on writing concisely, clearly and accessibly so that everyone can enjoy our content. 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 dancing around the kitchen to oldies music, watching The Great British Bake Off and Facetiming her family.

Sophia Rodrigues

Fundraising Officer

Likes:

  • Lemon and ginger tea
  • Seals
     
     
     
     
     
     
     
     

    Favourite moment at Beacon:

    Meeting the whole team over a virtual take-away. Everyone was so friendly.

  • Catalan music

Favourite moment at Beacon:

Meeting the whole team over a virtual take-away. Everyone was so friendly.

Sophia joined Beacon in January 2022 in the role of Fundraising Officer. After graduating with a degree in Biology, she worked with a variety of non-profit organisations before coming to Beacon.

Sophia is responsible for:

  • Finding and maintaining funding for Beacon’s projects
  • Monitoring the success of projects
  • Creating fundraising proposals
  • Connecting with potential funders and supporters

Sophia has always been interested in charity work. In particular, she cares about ensuring that funding is used effectively, to have the greatest positive impact to reach as many people as possible. As a former biologist, she is also passionate about demystifying scientific and healthcare information so that it is easily accessible to the public and help is available to those who need it most.

In addition to fundraising, Sophia loves water sports. Outside of work, she will most likely be in a swimming pool somewhere. Alternatively, she may be curled up in bed reading a book or recovering from the aforementioned swim session or water polo match.

Our charity trustees

Dr. Nicolas Sireau

Co-founder and Chairman

Read bio

Dr Nicolas Sireau is the Interim 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).

Dr. Anthony Hall

Co-founder and Vice-chair

Read bio

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

 

Read bio

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 Kissmann

 

Read bio

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

 

Read bio

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

 

Read bio

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 Scientific Advisory Committee

Dr. Bruce Bloom

Read bio

Dr. Bruce Bloom is Founder of Cures Within Reach, a non-profit saving lives by repurposing human approved drugs and devices to quickly deliver safe and affordable treatments and cures for diseases that have no currently effective therapy.

Dr. Bloom became an Ashoka Social Entrepreneur Fellow for his system-changing solutions to finding new treatments for unsolved diseases. He is the Patient Advisory Board Chair for the Institute for Translational Medicine, the Director of Scientific Affairs for Vision for Tomorrow, on the Science Advisory Boards of Rediscovery Life Sciences, the GARROD AKU Consortium, the Dr. Ralph and Marian Falk Medical Research Trust Awards Programs, and Healx, the Chair of the Governance Committee of the Kendall College Charitable Trust, and a member of the Board of Councilors of Midwestern University, and a member of the editorial board of ASSAY and Drug Development Technologies.

Dr. David Cavalla

Read bio

David Cavalla has 30 years experience in various senior scientific and commercial roles within the pharmaceutical industry, and 15 years in drug repurposing; previously he was founder and CEO of Arachnova Ltd, and prior to that, at Glaxo Group Research Ltd and Napp Research Centre. He is also founder and principal of Numedicus Limited.

He is author of Off-Label Prescribing: Justifying Unapproved Medicine, and one of the first advocates of drug repurposing, using this strategy to create three first-in-class developmental products to have successfully passed human proof of concept clinical stages. He obtained a first degree and PhD at Cambridge University and spent two years as a visiting Fellow at the NIMH, Washington, DC. He is author/inventor of over 70 published papers and patents.

Dr. Mark Edwards

Read bio

Mark is a medically-qualified doctor (a former NHS anaesthetist) with c.25 years’ pharmaceutical R&D experience. He was a Global Clinical R&D Director and then Director of Science and Medical Public Affairs at Pfizer. He has worked at all phases of clinical development across a wide variety of therapeutic areas. This included leading Pfizer’s global clinical development team to achieve US/EU regulatory approval of sildenafil as a first-in-class treatment for pulmonary arterial hypertension.

He has also established major R&D projects at the interfaces between academia, the NHS and the biopharmaceutical industry e.g. MRC/industry stratified medicine consortia in COPD and RA, and the NIHR’s Translational Research Partnership Programme.

Now he mainly provides strategic and applied clinical, scientific and policy advice to small and medium-sized biopharmaceutical companies. Mark works with a diverse range of other life sciences organisations at Board/Committee level, or as a business mentor. These include the ME Trust and Dyskeratosis Congenita Action.

Dr. Kathryn Johnson

Read bio

Kathryn is a neonatal paediatrician working at the Leeds Teaching Hospitals NHS Trust where she holds positions as a Consultant Neonatologist and Research Lead for Leeds Neonatal Service. The Neonatal Service in Leeds is one of the busiest in the country with 55 beds including 15 intensive care cots. The service provides care to infants with surgical, cardiac, neurosurgical, renal and hepatic conditions including many with rare congenital abnormalities or diseases.

Kathryn has a long standing interest in neonatal/paediatric rare disease and is committed to supporting research into such conditions with the ultimate aim of improving the lives of babies, children and families. She has a strong research delivery record within the neonatal service and as an executive committee member for the British Paediatric Surveillance Unit has a unique experience and insight into surveillance for paediatric rare disease. Kathryn’s is also Scientific Advisor for the charity Action for Ataxia Telangectasia, where her role is to monitor the progress and outcomes of the research projects the charity funds.

Margaret Ogden

Read bio

Margaret Ogden lives with Wegener’s Granulomotosis, a rare auto-immune disease. She has been a volunteer in patient and public involvement activities over the past decade. She is a Patient Safety Champion and has worked with medical students at Teesside University. Her main areas of interest centre around research and she attended the International Research Summer School in 2011. Her specialisms include diagnostics, developing guidance and quality standards, the community pharmacy and medication reviews, oral health, respiratory disease, equality and diversity and patient empowerment.

She has found living with a chronic physical illness difficult and challenging. While tolerating the treatment well, the side effects have been overwhelming. She hopes that this is an area where she can give a substantial contribution to the work of the Committee. Repurposing of drugs will be a new field and she is looking forward to meeting the challenges of this important area of work.

Dr. Edmund Jessop

Read bio

Edmund Jessop has been practising public health for the NHS in England since 1981 in various jobs at district, regional and national levels. Since 2002, he has been medical adviser to the team which plans, funds and monitors services for patients with very rare disease. This has included decision making, and more recently close liaison with NICE, on the so-called “ultra-orphan” drugs as well as other highly specialised technologies. Edmund is UK representative to the EU Expert Group on Rare Disease.

He was Vice President of the UK Faculty of Public Health (FPH) from 2011 to 2014 and Editor of the Journal of Public Health 1998 – 2007. He has taught courses on public health including health economics and health technology assessment for over 15 years.

Dr. Kamlesh Sheth

Read bio

Dr Kamlesh Sheth is a UK-based licensed pharmaceutical physician with over 25 years experience in the healthcare and life-science industry. He is director of PharmacoMedics, Aegleio and Glockal. Kamlesh has significant experience of working with patient groups including mentoring. He also has drug development, clinical research and regulatory experience of over ten years in rare diseases. Kamlesh has a keen interest in and experience of drug re-purposing in the pharmaceutical industry.

He is a Fellow of the Faculty of Pharmaceutical Medicine (FPM) with additional responsibility as a chairman of the Commercial, Industrial and Medical Affairs Special Interest Network of the FPM and also a member of its Rare Disease Network. Kamlesh is an operational committee member of British Association of Pharmaceutical Physicians (BrAPP), medical appraiser for pharmaceutical physicians and is on the Board of Examiners of FPM.

Our Patient Group Engagement Committee

Chris Bedford Gay

Read bio

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).

Christine Mutena

Read bio

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.

Craig Mitchell

Read bio

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.

Francesca Wicks

Read bio

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.

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.

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.

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.

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.

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.

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.

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.

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 Findacure 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’.

Rick Thompson

CEO

Likes:

  • Indie-rock music
  • Dinosaurs
  • The Wire

Favourite moment:

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.

Mary Rose Roberts

Head of Operations

Likes:

  • Eurovision
  • Skiing in the Alps
  • Swimming in the sea
  • Marvel Cinematic Universe

Favourite moment:

The Virtual Rare Disease Showcase; our first ever large-scale, multi day virtual conference and a huge professional challenge.

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!

Mary Rose – or MayRo as well like to call her – joined Beacon in 2016 as the charity’s first Events Officer.

She became Head of Operations in 2019 and now oversees the strategy, development and delivery of all of Beacon’s patient group training and community building projects. Mary Rose heads-up our Projects Team, and plays a key role in the day-to-day running of the organisation.  

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. Mary Rose prides herself on her organisational skills and the attention to detail that makes our projects so successful.

In her spare time, Mary Rose is an aspiring kayaker, Zumba-goer, baker, origami dabbler and guardian to Jasper, her ginger cat.