I work full-time at Alstrom Syndrome UK who now manage the Breaking Down Barriers project.
I support the BDB project in developing their website, communications both internally and externally and coordinating the BDB events.
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.
Now my role is full-time and is varied, from funding applications, managing social media to website and literature development to planning for 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; 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 working with such inspirational families and dedicated professionals.