Families affected by Neurofibromatosis will gather this April at a community picnic in Canning to connect and support one another.
The Teddy Bears Picnic, organised by the Neurofibromatosis Association of Western Australia, will take place on Friday, April 17 from 10:30am to 12pm at Kent Street Weir.
Committee member Jessica Rangi said the event was created to help families feel less alone.
“Isolation, from my experience, has been massive,” she said. “I didn’t meet another person with Neurofibromatosis until I was 34, on the day my son, Cadeau, was born.”
Neurofibromatosis, often referred to as NF, is not a single condition.
“Neurofibromatosis isn’t just one condition. It’s actually made up of three,” Ms Rangi said. “A lot of people hear the name and don’t realise how complex it really is.”
She said the condition can involve a range of symptoms and is not always visible.
“What many people don’t understand is that NF affects everyone differently, and a lot of what families deal with isn’t always visible.”
The upcoming picnic is designed to be informal so families can feel at ease.
“It was really important for us to keep this as a relaxed, casual picnic so children feel comfortable enough to just be themselves,” she said.
“Formal events can sometimes feel overwhelming, especially for kids. We wanted this to be easy, welcoming, and pressure-free.”
She said the focus is on creating a space where children feel included.
“It’s about creating an environment where every child feels welcome, accepted, and able to just be themselves without judgement.”
The event is open to all children living with disability or neurodiversity.
“We want to open that space to all children living with disability or neurodiversity. Inclusion is about making sure no one feels left out.”
Ms Rangi said the response from families so far has been encouraging.
“Families have loved the idea of coming together and giving their children more opportunities to connect, build friendships, and form meaningful relationships.”
She said the picnic is part of a broader plan to build stronger support networks across Western Australia.
“Yes, this is only the beginning of something really special,” she said.
“We’re working towards building a stronger, more connected community, bringing people together from children right through to adults.”
Ms Rangi encouraged families who may be unsure if they want to attend.
“I would say come along. You have nothing to lose and everything to gain,” she said.
“We understand that it can feel a bit daunting, especially if it’s your first time connecting with other families, but this is a really welcoming and supportive space.”
The group is also planning a separate awareness event next month.
“On May 17, for World NF Awareness Day, we’ll be hosting a more formal event, with Kings Park lit up in blue and green,” she said.
She said raising awareness remains important alongside building community.
“One final thing I’d really like people to understand, tumours should not be anyone’s normal,” she said.
“We are fighting for change. We are fighting for more research. And we are fighting to build stronger community connections, so that no one living with Neurofibromatosis ever feels alone.”
The association thanked the City of Canning for supporting the event.
Families can RSVP via the Neurofibromatosis Association of WA website.
