Our team

Sara’s sons were diagnosed with leukodystrophy in 2001. She is proficient in administration and has self-educated, achieving a Level 3 NVQ in Leadership & Management, successfully completing the EUPATI Medicines Research & Development Process course and achieving Level 3, Understanding the Health and Social Care Environment.

Her passion, as well as professional and personal experience, has been instrumental for the development of Alex TLC into the lead organisation for leukodystrophy in the UK. As the CEO she is responsible for the welfare of 27 staff, approximately 40 volunteers and an annually increasing turnover above £1 million.

She leads on projects to deliver best practice treatment and prevention within the NHS and is responsible for partnership development and the overall strategic direction of the organisation.

Click here to read Sara’s story

Karen’s twin sons were diagnosed with leukodystrophy in 2004 and she joined the team in 2013. As a leukodystrophy mum, Karen brings significant personal ex­perience to supporting beneficiaries, and works with specialists to ensure best practice in treatments & awareness within the NHS. She regularly presents Alex TLC’s work and key messages to professionals and peers and is often requested as a speaker at conferences and events.

Click here to read Karen’s story

Karen is also the safeguarding lead for Alex TLC.

Maria came to the UK from Brazil in 2001.

With a background in bookkeep­ing and accountancy, she joined as a volunteer to improve her English in 2007. She became a shop manager in 2010, promoted to Area Manager in 2014, and was promoted to Retail Op­erations Manager in 2017. In July 2018 she took on a new role as Accounts Manager.

Grace is a passionate charity retail leader who was recently promoted to Retail Area Manager, after successfully serving as store manager. She is dedicated to maximizing profits for our vital cause by driving sustainable retail practices.

Grace is excited to step into this new role to help our retail business thrive, connect with local communities and increase our charitable impact.

Marlene’s joined the charity in October 2021.

Her first son was diagnosed with a genetic condition called Trisomy 18 (Edward’s Syndrome) during pregnancy. Sadly, he was stillborn at 38 weeks, but his existence touched so many lives and helped drive Marlene towards a career within the third sector.

Her background in office management, credit control, customer service and admin, combined with over a decade working in fundraising, puts her in a good position to lead on increasing our voluntary income.

Marlene is also the Data Protection Officer for Alex TLC.

Suzanne joined the charity at the start of 2021. Her background is in mental health, learning disabilities and brain injury.

In her previous roles, she has provided information and advice to affected individuals and their families.

Her experience includes collaborating with professionals and other organisations, developing connections and working relationships.

She is responsible for raising awareness of the work of the charity and the support available to families affected by Leukodystrophies.

Fiona’s mum has an adult onset leukodystrophy called ALSP, and Alex TLC have provided support and guidance to them both, on what was originally a very difficult and confusing journey.

Prior to joining the charity, Fiona worked for 14 years in NHS administration, she also studied Visual Art and Design at university and volunteered as Artist in Residence at her local children’s hospice (Demelza House), creating activities for the children and their siblings.

Kristina joined the charity in February 2023, she has a Bachelor of Science in Bioscience: Molecular Biodesign and a Master of Medical Science with the main field of study in Forensic Science.

She is passionate about the study of genetics and helping others. She is looking forward to applying her experience and knowledge in science and research to further the awareness, knowledge, understanding, and communication within the research field of leukodystrophies and Alex TLC in her role as Research Analyst to help patients and the community.

Mel is an accredited counsellor with 17 years of experience supporting people through life’s challenges, including illness, loss and major change. She has worked across the NHS and charity sector as a senior counsellor, supervisor and manager of a national online bereavement counselling service.

Mel offers a calm, supportive space where clients can explore their thoughts and emotions at their own pace. Her approach is grounded in empathy and collaboration, helping people find a sense of balance and strength during times of uncertainty.

She believes in helping clients recognise their own resilience and capacity for growth, even in the face of significant challenges. Her aim is to support each person in finding ways to live with greater self-understanding, hope and connection.

John is a freelance fundraising consultant, specialising in trusts and foundations fundraising.

With more than 25 years’ experience, he has helped charities across the UK secure significant grant funding for projects, core costs and capital appeals.

He enjoys working closely with organisations to understand their ambitions, identify the right funders and write funding applications that make a real difference to the people and communities they support.