Forget Me Knot

Every child deserves to be remembered

Forget Me Knot is a global awareness and fundraising campaign that brings visibility to the individuals, families and communities impacted by Batten disease.

Launched in 2025, Forget Me Knot invites people to tie a simple knot somewhere visible, on a finger, wrist, school bag, car mirror, mailbox, fence, workplace or sporting equipment. It is a small act, but one carrying a powerful message: do not forget children and young people living with Batten disease and the families walking beside them.

By tying a knot, people across countries and cultures unite in a shared symbol of remembrance, hope, and solidarity. This simple yet powerful act creates a visible global movement to shine a light on a rare and often overlooked disease, driving awareness, compassion, and the urgent need for research and support, no matter where you are.

Every knot tied represents a child, a family and a story that deserves to be seen and remembered.

Each act of tying one is a bold declaration – a refusal to let these children and young adults fade into silence and a powerful commitment to drive urgent action for better care and support, accelerated research, and ultimately, a cure.

Where will you tie your knot?

How Can You Get Involved?

Tie. Share. Remember

Tie a knot on your wrist, your mailbox, your office chair … anywhere.
Take and share a photo on Instagram and Facebook using #ForgetMeKnot and tagging @BDSRAAustralia

Post a Social Media Tile

Use of the social media tiles available for download below and post on Instagram, Facebook or Linkedin using and in the copy section, complete the sentence

‘Forget Me Knot because....’

Write it yourself or choose one of the suggested copy messages provided below: