Luton music event to raise money

Friends of a woman who has a rare genetic condition are organising a fundraiser to help her travel to a specialist conference in the USA.

The girls are hosting the live music event at The Bear Club on Friday, February 27.

Sarah Burgess, 33, of Luton, was diagnosed with Mucolipidosis Type 3, when she was eight years old.

It is a storage disease which means her body is missing enzymes that break down and dispose of cells, it causes the ends of her bones to crumble.

She has undergone extensive bone surgery to keep her mobile.

The youth worker is hoping to raise £3000 to go to The 4th International Conference of Glycoproteinoses.

She said: “The conference in July is for one week and it will help me learn about my condition and what the future holds, there will be experts from across the world attending.

“I am so grateful that my friends are organising this fundraiser for me, I am really looking forward it, a lot of people have said they are coming.”

The fundraiser at the Mill Yard venue has been inspired by Sarah’s love for live music.

It starts at 7pm, there will be an auction, raffle and live performances.

Mariana Brown, one of the organisers. said: “I think it is important Sarah gets this opportunity.

“It has been challenging for her, though the consultants working with her have been very supportive and have done everything they can to make her life as comfortable as possible.

“Despite all of the operations, I have never heard Sarah complain, her attitude is to get on with things.

“She works with young people to turn their lives around and she goes out to see her friends.

“She is an inspiration really, proving that you can do anything you set your mind to, despite what cards you are dealt.

“When she said about the conference, I knew that we could put on a great event to raise funds and make this possible for her, and as her friends, we want is best for her.”

To donate to Sarah’s fund, visit: