Charity ball to raise awareness of rare mitochondrial disease

Charity ball to raise awareness of rare mitochondrial disease
Carolyn Farrar carolyn.farrar@donegaldemocrat.com @dgldemocrat

An Arranmore Island woman is organising a charity ball to raise awareness of a rare disease that people may have difficulty discussing.

The Katie Rose Foundation is holding the first Katie Rose Ball at 7pm, October 8th, in the Sligo Park Hotel, to raise awareness of mitochondrial disease and raise funds to support research.

Fiona Rodgers of Arranmore said she wanted to organise an event to spread awareness and also to be a fun night for people, because she knows the message they want to get out is not an easy one.

"It’s not a nice thing to talk about,” she said. But she said it was important to talk about mitochondrial disease in the same way people talk about cancer and other diseases, to bring it into the public consciousness.

Fiona and her husband, Sean, established the foundation in memory of their daughter Katie Rose, who passed away at age 2 in December 2014 from mitochondrial disease.

Mitochondria are the “powerhouse” of cells, responsible for more than 90 per cent of the body’s energy and necessary to sustain life and support growth. Mitochondrial failure means that the body’s organs do not have enough energy to work. There is no cure for mitochondrial disease.

“It’s difficult to talk about,” Fiona said. “It’s definitely difficult.” But it is important to talk about it, she said.

So she has planned a fun and glamorous evening of entertainment, and hopes “that balances against the message that’s underlying it”.

The evening starts with a drinks reception to music by Sligo’s Dean Mahon, followed by a three-course meal served in the ballroom. The well-known band, The Curlybobs, and DJ Scruffy Duffy will provide the music. Fiona wants people to come and enjoy themselves, while supporting the worthy cause.

"And if I could get half that room, when they get home, to go and look up mitochondrial disease, I would be really, really happy,” she said.

Tickets are available by looking up the Katie Rose Ball at eventbrite.ie, or through the Katie Rose Foundation Facebook page or web site.

Pictured: Sean and Fiona Rodgers with their daughter Katie Rose, in a November 2014 .