'The community out here must be so special': Pirates kick in for a worthy cause

They're not alone.

So when Pirates president Maryjane Gavin floated the idea to them about holding a Family Fun Day in support of Elsie and the PMS Foundation Australia, they thought it would be a good way to raise awareness about the syndrome.

They hoped to raise some money for the organisation, but their main objective was to increase awareness around not only PMS but other rare genetic disorders.

What transpired was beyond anything they could have imagined.

Through the generosity of the 'Pirates family' and wider Tamworth community, last Friday Mrs Gavin, on behalf of the club, and the Trappel family, presented a cheque to PMSF co-founder and director Megan Toole for a staggering $33,533.54.

Mrs Toole, who founded the association 10 years ago after then one-year-old daughter Olivia was diagnosed with the disorder, said she was "speechless" when April informed her of how much they had raised.

"I actually cried," she said, almost overcome by emotion again.

"It's a hard journey for the families dealing with what they're going through and to do something great like this....

"We have done fundraising every year for the last 10 years, and we might raise $500, or we might raise $3,000 or $10,000, but this is huge.

"The community out here must be so special to come and support Elsie and her family."

The Trappel family equally couldn't believe how much the day raised.

"Just incredible," April said.

"Speechless is probably the best way to put it."

"We set out with a really small goal.

"We thought maybe we'd come with a few thousand dollars to donate.

"Then once the day hit, and the auction started, we were just blown away."

Affecting brain development and functioning, and causing intellectual and physical disabilities, Mrs Toole recalled how when Olivia was diagnosed, so little was known of PMS, that the paediatrician told them she had to "google it".

Similarly for the Trappel's, Elise is one of the first cases her doctor has come across.

With presently no cure or treatment, the foundation's main objective is supporting those affected and their families.

One of the ways they do that is their 'family conferences', which is what the money they raise goes towards.

"We bring doctors from the States over to come and present to the families," Mrs Toole explained.

So far they have held two, with plans underway for one in 2025.

"They're about bringing people together and getting an understanding of what the syndrome means," she said.

"I think just getting them together, people feel connected with other people going through the same thing, which is really nice."