I have worked for Alstrom Syndrome UK in a variety of roles since 2010, but have been part of the Alstrom community since 2006 when I had the privilege to support an inspirational young lady who had the condition.

My work initially started with ASUK as a  Child Development Officer in 2010 to support families throughout the South of England, due to being made redundant from my Social Work. I found the Alstrom community inspirational and this made me want to be involved in further ways to help sustain the charity into the future. This lead me to study with the Open University in Fundraising Management and shadow our Fundraising Manager at the time.  Over time we were able to secure funding to establish administration support for the Chief Executive and enabled me to concentrate on funding applications and ways we could improve our communications such as the website and with International professionals.

With me residing in Torquay, it was more cost effective to assign Family Support Workers to specific areas in the UK to support families effectively and this developed into my current role of Office Manager as an office based role.

Now my role is full-time and is varied, from funding applications, managing social media to website and literature development to planning for our family events, such as the ASUK conference and NHS multidisciplinary clinics.

After what felt like a long 4 years, I qualified as a Counsellor in 2017; although I don't offer this service for families, my studies give me an understanding of the importance of looking after our own mental health and wellbeing.

I enjoy my varied work and most of all enjoy being part of the Alstrom community; the families are truly inspirational and it is a privilege to work with them and the team at ASUK who work tirelessly to support families and ensure they are leading a fulfilled life.

We may be a small charity, but we are big on ideas, big on support and passionate about promoting the needs of all people who are marginalised in our society.  

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