Fundraising Concert to Combat Rett Syndrome Set for August 2

A fundraising concert called LucyFest will take place at The Wedgewood Rooms in Southsea on August 2, 2025, to raise money for the charity Reverse Rett, which focuses on reversing the rare genetic condition known as Rett syndrome. The event, featuring local bands including the ska act Offbeat Offensive, aims to support families affected by this debilitating disorder.

Lucy Glenn, a 13-year-old girl from Portsmouth, has been diagnosed with Rett syndrome since she was 18 months old. The condition significantly impairs her ability to communicate and control her movements. Recently, Lucy made strides in her ability to interact with the world thanks to an Eye Gaze computer, which her family acquired through a successful fundraising campaign. The device allows her to select songs, express preferences, and communicate basic needs by tracking her eye movements.

Dan Sawyer, Lucy’s stepfather, described the impact of the Eye Gaze technology on her life. “It’s been pretty massive,” he said. “For the first time, she can express when she’d like to go to bed or let us know when she’s tired.” Lucy has shown remarkable improvement in her mood and happiness, as she can now communicate her desires, such as listening to her favorite artist, Justin Bieber.

The Eye Gaze computer and its accompanying stand cost over £10,600, a significant investment that was made possible through community support. After raising more funds than needed, the family donated over £1,000 to Rett UK, another charity focused on supporting those affected by the condition.

Dan and his partner, Katherine McCready, are also ambassadors for Reverse Rett. Katherine actively participates in community efforts, providing support and advice to other families dealing with Rett syndrome. The couple emphasizes the importance of community in coping with such a rare condition, which affects only a small number of individuals.

Promising developments in treating Rett syndrome are currently underway, with clinical trials for a gene therapy showing potential success. “Some girls have been able to start using their hands again or say words,” Dan noted. “There’s optimism, but we remain realistic about the challenges ahead.”

To further support research and awareness, LucyFest will offer a night filled with music and community spirit. Dan, a musician himself, is enthusiastic about the event. “It’s going to be a pretty positive, upbeat night,” he said, highlighting the diverse lineup of pop-punk anthems and ska music.

Tickets for the concert are priced at £10 and can be purchased through the venue’s website. Proceeds from the night will go directly to Reverse Rett, continuing the vital work of supporting families and advancing research into potential treatments.

As the community rallies around this cause, the concert not only aims to raise funds but also to spread awareness about Rett syndrome and the challenges faced by those living with it.