Wolfram Syndrome UK

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My name is Tracy Lynch and I’m the CEO and Co-Founder, alongside my husband, of Wolfram Syndrome UK (WSUK). I started my journey with the charity when we formed it 3 weeks after our daughter’s diagnosis in March 2010.

There was no support for people and families affected by this condition in the UK. We wanted to do something about this to help not just our family but others as well. If we had no support or knowledge then neither did they. I was working blind as I had no experience of working for or running a charity, so every step has been a learning experience.

We started off with connections with just 5 other families and now have about 80 people from the UK and many others from around the globe on our database.

We have many supporters who have continued to donate and fundraise for us over the years which have also developed into friendships. We have a few events which are now annual fundraisers or social/information gatherings.

This year we created and held our first global awareness day involving our global community and other WS groups digitally. With the pandemic we moved our annual conference online which enabled our global community to attend which many are unable to do normally and this will continue as we adapt to a hybrid format.

Beacon have been there helping me to connect with other rare disease charity communities, providing information through virtual discussion groups or their conferences either face to face or virtual. Being able to share thoughts, ideas and what we do is really helpful especially as we continue to move forward and grow.

Tracy Lynch

CEO, Wolfram Syndrome UK