Staff, Consultants, and Volunteers

Key Staff

Lara Bloom
President and CEO
London, UK

Alan Hakim, MA, FRCP
Chief Medical Officer, Registry and Education Director
London, UK

Fransiska Malfait, MD, PhD (Consultant)
Chief Scientific Officer
Ghent, Belgium

Eric Alley
Financial Director
Oklahoma, USA

Sinead Waugh
Chief of Staff
Kent, UK

Stacey Simmonds
Events Director
Hertfordshire, UK

Erin Simons (Consultant)
Marketing Director
North Yorkshire, UK

Shani Weber
Youth Program Director
Maryland, USA

Danielle Hohlier
Community Giving Director
Oklahoma, USA

Rebecca Gluck
Community Education Director
Michigan, USA

Paul Gardener
EDS ECHO Manager
London, UK

Joe Holdsworth
Design & Communications Manager
Hertfordshire, UK

Jack Annable
Senior Graphic Designer
Derbyshire, UK

Mark Martino
Texas, USA

Faye Moran (Consultant)
Marketing Coordinator
North Yorkshire, UK


Charli Baynes
Website & IT Coordinator
Lincolnshire, UK

Sacha Aziz
Events Coordinator
Birmingham, UK


Owen Moore
EDS ECHO Programs Coordinator
Connecticut, USA


Oumaima Nehaili
Research Grants Coordinator
Ohio, USA


Scarlett Eagle
Community Content Coordinator
Iowa, USA


Isabelle Brock
Center of Excellence Coordinator
Illinois, USA

Beth Pillow-Edwards
Research Project Coordinator
Wales, UK

Amelia Rinker
Global Registry, Centers and Networks of Excellence Program Coordinator
Minnesota, USA

Rosie Harper
HR & Operations Coordinator
Hertfordshire, UK

Becky Potter
Website Administrator
Hampshire, UK

Elliss Lewin-Turner
Community Engagement Coordinator
Manchester, UK

Emily Shotbolt
Community Fundraising Coordinator
Birmingham, UK

Janae Davis
Grants & Foundations Coordinator
North Carolina, USA

Volunteer Leaders

Maggie Buckley
Advocacy Advisor


Francie Fitzgerald
Research Associate

Sophie Castle-Clark
Global Policy and Commissioning Advisor

Sara Sharpe

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