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.’
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KIF1A Associated Neurological Disorder (KAND) is a rare, progressive neurodegenerative disorder often described as a form of childhood dementia that currently has no cure, but researchers at the Murdoch Children’s Research Institute (MCRI) in Australia are working to change that.
"[Their research] is helping all of the kids, which is really incredible," said Luke Rosen, founder of KIF1A.org, whose daughter Susannah was diagnosed with the disorder at age 2.
"And the folks at Murdoch, I say they're extended family to us, and they really are."
KAND is a severe and progressive condition. Children can experience seizures and, over time, lose cognitive function, motor skills and vision. The disorder affects each patient differently, often making it difficult to diagnose.
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Rosen said what sets MCRI apart is its personal approach — with researchers taking the time to truly know the families they’re trying to help.
"The first thing [a researcher] said to me is, 'How's Susannah? How's she doing?' And he really got to know our family, and he travels and so does their whole team... to our yearly Scientific and Family Conference, so they really get to meet all the families."
A new Fox Nation special spotlights MCRI’s work, as well as families like the Rosens who are working with researchers to treat the debilitating disorder.
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Rosen has since dedicated his life to advancing research and finding treatment options. He works closely with MCRI in an effort that is already showing promise.
Susannah was among the first patients to receive antisense oligonucleotide (ASO) therapy, and her family says they’ve seen meaningful improvements in her condition.
While the treatment is not yet approved in Australia, Rosen continues working with doctors to expand access with the hope that, eventually, families won’t have to travel for care.
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"Their research is really translational research that helps everybody," Rosen said.
"While we don't have a therapeutic yet from Australia, they're really working hard to develop it, and they're accelerating that entire process. What's special about Murdoch is they work in multimodalities, so there's gene therapy and then traditional drug development, and then they work non-sequentially, and they are just trying to throw as many shots on goal as we can for the kids."
"Hope Starts Here," hosted by Fox News' Benjamin Hall, is available now on Fox Nation.
Taylor Penley is an associate editor with Fox News.