Kif1a Australia Foundation

28/08/2026

Kids Advanced Therapeutics is running a workshop for families and are inviting families and carers of children with rare diseases known to the Sydney Children’s Hospitals Network, who may access or have accessed advanced therapies (e.g. gene or RNA therapies) to the:

Kids Advanced Therapeutics Lived Experience Engagement Project (KAT LEAP) Workshop
🗓️ Tuesday 20th October, 10:00am – 2:30pm
📍 Sydney, Kids Research (next to The Children’s Hospital at Westmead)
✨ Participants will be remunerated for their time
🔗 More information and expression of interest: www.redcap.link/KATLEAP
🤝 Contact [email protected] for any questions

There will be two one-hour long focus groups, to discuss how families prefer to share knowledge when accessing therapies and how they want to work with the KAT program.

11/05/2026

Today we join the KIF1A Australia community in celebrating Summer’s 5th birthday. 🩷🤍🌟

A message from her mum:

Happy birthday, beautiful Summer. Every year with you is a blessing, and your journey is a powerful reminder of strength, resilience, and the quiet moments of joy that mean so much to families living with KIF1A.

We are honoured to be part of the broader community as we continue to raise awareness, support research, and hold hope for the future.

We didn’t wrap your presents because you don’t like the sound of paper tearing, but your day was made in a way that felt safe, gentle, and full of love just for you. And this year, you even enjoyed your cake, which is something truly special 🎂

Here’s to many more birthdays ahead; watching you learn to walk, run, and dance. We continue to hold hope for all that is still to come. 💛🩷💙

07/05/2026

❤️

KIF1A.org founder Luke Rosen discusses his daughter’s battle with a rare neurological disorder and the Murdoch Children’s Research Institute’s work to advance potential treatments on ‘Fox & Friends.’

05/05/2026

🎬 PREMIERING TODAY — KIF1A DOCUMENTARY 🎬

Today May 5, 2026 - a powerful new documentary featuring our KIF1A community will be released in Australia 🌍🇦🇺
“Hope Starts Here: Murdoch Children’s Research Institute” shares the stories of families living with KIF1A across Australia and the United States, alongside the incredible researchers working to develop treatments for KAND.
This documentary has been nearly a year in the making and highlights:
✨ The reality of living with KIF1A
✨ The strength of our children and families
✨ The urgent need for research and treatment
📺 Where to watch:
Available in Australia and globally for FREE on Tubi
Also available to stream on Fox Nation (US streaming) from 3:00am EST May 5th.
This is a big moment for awareness — please watch, share, and help us spread the word.
Together, we are stronger ❤️


Link 🔗
https://tubitv.com/movies/100057797/hope-starts-here-murdoch-children-s-research-institute

05/05/2026

The Murdoch Children’s Research Institute celebrates 40 years. 💙

Read more 👉
https://www.heraldsun.com.au/health/family-health/inside-the-bold-mcri-plan-to-help-australian-childrens-health/news-story/35468d3eff9e80510cc9fb9e66cfc67d

40 years ago, MCRI was founded to “do something” for sick children 🫶

Today, we’re facing a reality no generation should accept – that children’s health could be worse than their parents’. To meet the moment, we’re drawing on four decades of discovery with world leading research delivered at scale to change the trajectory.

To give all children the opportunity to live a healthy and fulfilled life.

This is legacy in action.
For all. Forever ♾️

Read more 👉 https://www.heraldsun.com.au/health/family-health/inside-the-bold-mcri-plan-to-help-australian-childrens-health/news-story/35468d3eff9e80510cc9fb9e66cfc67d

Herald Sun

28/04/2026

Today is KIF1A Day. 💙
Today, we celebrate our superheroes all around the world.
KIF1A Associated Neurological Condition (KAND)
is an ultra-rare, neurodegenerative disorder…
with only around 600 known cases worldwide.

It is a condition that can take away a person's ability to walk,
to talk, and to see.

Different languages.
Different journeys.
One community.

Every person featured here is part of something incredibly special.
Their days are filled with challenges
in moments many of us move through so easily…
like walking, talking, and everyday life.

And yet
they are brave.
they are resilient.
they are changing the world simply by being in it.

Behind them are incredible families and local communities
loving, supporting, and never giving up.
We also recognize the medical teams and researchers
working tirelessly
to find a treatment, and one day, a cure.

KIF1A may be rare…
but together, our voices are strong.
Today is about awareness.
Today is about connection.
Today is about our children.
Together, we stand.

Together, we share their stories.
Together, we fight for a future.
Today, on KIF1A Day 28 April,
we stand together as one.

💙 We have hope. 💙

Thank you to KIF1A Australia leader Jeanette Harris for making this video and to everyone who contributed your pictures, videos, and stories!

28/04/2026

Happy KIF1A day!

KIF1A Associated Neurological Disorder (KAND) is a rare genetic condition. In collaboration with KIF1A organisation, our team recently investigated speech and language features, support needs, and strengths in people with KAND. This research highlighted the importance of individualised speech and language therapies for people with KAND. Please read more in our full article or plain language summary linked in our bio 🔗

Thank you to all the families who have taken part in our research.

28/04/2026

Today is KIF1A Day. 💙

Today, we celebrate our superheroes all around the world.

KIF1A Associated Neurological Condition (KAND)
is an ultra-rare, neurodegenerative disorder…
with only around 600 known cases worldwide.

It is a condition that can take away a child’s ability to walk,
to talk, and to see.

Different languages.
Different journeys.
One community.

Every child featured here is part of something incredibly special.
Their days are filled with challenges
in moments many of us move through so easily…
like walking, talking, and everyday life.

And yet
they are brave.
they are resilient.
they are changing the world simply by being in it.

Behind them are incredible families
loving, supporting, and never giving up.

We also recognise the medical teams and researchers
working tirelessly
to find a treatment, and one day, a cure.

KIF1A may be rare…
but together, our voices are strong.

Today is about awareness.
Today is about connection.
Today is about our children.

Together, we stand.
Together, we share their stories.
Together, we fight for a future.

Today, on KIF1A Day 28 April,
we stand together as one.

💙 We have hope. 💙
KIF1A.ORG KIF1A JAPAN
.australia.foundation