Our mission is to enhance the lives of individuals and families affected by Bruck Syndrome. As a charity, our work is guided by our three formal charitable objects, which are set out in our governing document:
To preserve and protect the health of individuals affected by Bruck Syndrome by providing and assisting in the provision of facilities, support services, and information not normally available from statutory authorities.
To advance the education of the public in general (and particularly among medical professionals) on the subject of Bruck Syndrome and its implications for the individual, their family, and the public.
To promote and support research into the causes, nature, treatment, and management of Bruck Syndrome, on the condition that the useful results of such research are disseminated for the public benefit.
Chair / Trustee
As the father of Elisa, who lives with Bruck Syndrome, Mahdi has a deep, personal understanding of the challenges families face. He is driven to ensure that no family has to navigate this journey alone and is committed to building a charity that provides real, practical support.
Trustee
Zahra has dedicated her career to public service as a police officer in London. She is bringing that same commitment to protecting vulnerable people to her role as a trustee, ensuring the charity operates with integrity and has a real impact on the community it serves.
Trustee
Farzad's role as a police officer is built on a foundation of public service and a duty to protect others. He is passionate about extending this commitment to the Bruck Syndrome community, helping to build a strong and supportive organisation for families in need.
Trustee
Hadis is a MSc Construction Project Management student with a strong interest in organisation, planning, and project delivery. As a trustee, she aims to use these skills to support the charity’s growth and help ensure it delivers meaningful support to the community.
Volunteer
As a graphic designer, Sahaana is driven by a deep curiosity about how people feel. She believes that design is a powerful tool to quietly support others and bring clarity to complex journeys. She is volunteering her incredible talents to help us communicate intentionally and keep our charity’s message human and accessible.