Donate to KIF1A research
KIF1A-Associated Neurological Disorder or KAND is a severe and rare neurodegenerative disorder caused by one or more variants in the KIF1A gene.
Donate today and help our dedicated researchers and clinicians continue their ground-breaking work into KIF1A. Every donation gets us closer to changing the future for children with KAND.
Donate today and help our dedicated researchers and clinicians continue their ground-breaking work into KIF1A. Every donation gets us closer to changing the future for children with KAND.
What is KAND?
KIF1A-Associated Neurological Disorder or KAND is a severe and rare neurodegenerative disorder caused by one or more variants in the KIF1A gene. This gene produces a protein that is only expressed in brain cells (neurons) and is critical for transportation of the important substances needed for neuronal survival and overall healthy brain function.
Symptoms of KIF1A-Associated Neurological Disorder can present at birth or in early childhood. It can affect both the brain and the body, including the eyes, muscles and nerves. Much about KAND is yet to be understood, however, some of the common symptoms are:
- Intellectual disability
- Delays in reaching developmental milestones
- Diminished muscle tone
- Poor coordination
- Seizures
- Muscle stiffness
- Reduced vision
As a progressive condition, symptoms will worsen with many children requiring the aid of a wheelchair. KAND does not affect any two people the same way and progression and severity varies.
There are around 600 children who have been diagnosed with KAND worldwide. However, we think that this is greatly underestimated due to a high number of individuals who have limited access to genetic testing and are currently either without a diagnosis or have been misdiagnosed with conditions such as cerebral palsy.
Image: Children with KIF1A and MCRI researchers
Why are we fundraising for KAND?
Currently, there are no specific treatments that reverse or halt KAND progression. There is a critical need to improve our understanding of KAND and to identify targeted therapies for children suffering from this life-threatening disorder.
Murdoch Children’s Research Institute’s Dr Simranpreet Kaur is leading Australia’s first KAND research program in collaboration with national and international collaborators including KIF1A.org. The team hopes to accelerate research into KAND, develop effective treatments through stem cell-based models and understand the cell process that changes in response to genetic changes in the KIF1A gene.
These advances will improve long-term health outcomes for this vulnerable group of children and may potentially offer unprecedented and life-changing opportunities for individuals and families affected by KAND and related disorders.
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