Nevada
Southern Nevada family fights rare ‘childhood Alzheimer’s’ disease while pushing for a cure
LAS VEGAS (KTNV) — A 4-year-old Las Vegas boy is battling Niemann-Pick Type C, a fatal disease affecting just 4 children in Nevada. His family is fighting insurance barriers, traveling cross-country for care.
Jordan and Jennifer Mitchell’s home is filled with love. Their son Liam, just 4 and a half years old, is doing what kids his age do — giggling and playing. But inside his body, a race against time is underway.
VIDEO: Abel Garcia talks to the Mitchell Family about their fight for their son and rare disease
Southern Nevada family fights rare ‘childhood Alzheimer’s’ disease while pushing for a cure
Liam is one of just four children in Nevada diagnosed with Niemann-Pick Type C, a rare neurodegenerative condition often called “childhood Alzheimer’s.” The disease slowly takes away a child’s ability to walk, talk and even swallow, and it is always fatal. Without treatment, children with Liam’s form of NPC may not live past age 5.
“When he was born, he had a lot of complications right from birth… and that helped us get to a diagnosis — as terrible as it is, we found out early,” Jordan Mitchell said.
The family says they have seen progress through a careful regimen of medications and spinal injections. But keeping Liam stable comes at an extraordinary cost — between $1.3 million and $3.1 million a year — and the Mitchells say they have already faced pushback from their insurance provider.
“Knowing that these medications do work… but if the insurance says they’re too expensive, that’s it — that’s not easy to live with,” Jennifer Mitchell said.
When I asked the Mitchells about access to healthcare in Southern Nevada, Jordan was direct.
“The healthcare in the valley is not good for preventative or trying to treat these long-term problems,” Jordan Mitchell said. “They ultimately said we couldn’t figure it out… and ultimately we had to go out of state to get him treated.”
Because Liam cannot fly due to his compromised immune system, the family makes cross-country drives to access treatment and research.
“We don’t fly… we’ve done eight or ten drives to the Mayo Clinic in Minnesota, and now to the test sites in Chicago once a year,” Jennifer Mitchell said.
Now, the family says hope is coming from a groundbreaking gene therapy study led by University of Iowa researcher Dr. Mark Schultz, which is showing promising results.
“We were able to prove that a gene therapy can cure Niemann-Pick Type C… we’ve funded a mouse liver study and we’re in the process of publishing that work,” Jordan Mitchell said.
To help fund that research, the Mitchells created a nonprofit — the Life for Liam and Friends Foundation — and host annual fundraisers in Southern Nevada.
“Don’t give up hope. If you aren’t trying, there’s no chance you’re going to get help… I am hopeful Nevada can improve healthcare so anyone can find the treatment they need,” Mitchell said.
The Mitchells say they will keep pushing, keep driving and keep loving their son for as long as they can.
Because families like the Mitchells have struggled to find specialized care here, I reached out to find out what else is being done. A spokesperson with Intermountain Health told me their first stand-alone children’s hospital planned for Southern Nevada will include neurology, with specialists on staff, when the hospital opens in 2030.
Meanwhile, 66 members of the Class of 2028 at the Kirk Kerkorian School of Medicine at UNLV received their white coats, marking their official transition from classroom studies to direct, hands-on patient care — a milestone that represents continued investment in building the next generation of doctors here in Southern Nevada.
If there’s something you’d like me to look into, email me at abel.garcia@ktnv.com.
This story was reported on-air by a journalist and has been converted to this platform with the assistance of AI. Our editorial team verifies all reporting on all platforms for fairness and accuracy.
Nevada
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Nevada
Nevada Youth Sports estimates $250K in damage after Fourth of July firework fire
LAS VEGAS (KSNV) — Nevada Youth Sports is working to keep thousands of young athletes on the field after a fire believed to have been sparked by illegal fireworks caused nearly a quarter of a million dollars in damage to its facility.
The fire broke out late on the night of July 4. Jane Ramos, chief administrative officer for Nevada Youth Sports, said she received a call from the organization’s landlord telling her there had been a fire at the building.
“We got a call from our landlord saying I needed to come out here right away because there had been a fire,” Ramos said. “We didn’t really understand the scope of what had happened until we could hardly open the door because of the fumes, the smoke, and the smell.”
According to Ramos, firefighters responded shortly before midnight after flames were reported on the roof of the building. In the days since, the organization says it has learned the fire is believed to have started when embers from illegal fireworks landed on the roof.
“It’s something that was preventable if it truly was illegal fireworks,” Ramos said.
Early damage assessments estimate nearly $250,000 in structural, electrical and water damage. Ramos said the organization is still working to understand the full financial impact.
“We’re trying to assess where we are financially in all of this,” she said. “It’s really a question mark.”
The damage has forced Nevada Youth Sports to temporarily close its facility, affecting the thousands of athletes and families who rely on the organization for leagues, clinics and training programs.
Nevada Youth Sports serves more than 14,000 athletes and families across the Las Vegas Valley each year. Ramos said the organization’s immediate priority is finding alternate locations so programs can continue with as little disruption as possible.
“We’re definitely allocating our resources toward those efforts,” Ramos said. “Whatever the cost is to continue programming outside of this building, that’s where we’re focusing our efforts right now.”
While investigators continue looking into the cause of the fire, Ramos said the organization hopes whoever is responsible will be held accountable. She said neighboring businesses have provided surveillance video that could help determine exactly what happened.
“I’m hopeful that we can point some accountability somewhere,” Ramos said. “Our commercial neighbors have been very kind to offer their camera footage, so we’re still collecting all of that information before we pursue anything further.”
Despite the damage, Ramos said the organization’s commitment to local families remains unchanged.
“We’ll continue to be steadfast and patient,” she said. “Our mission is being a partner to our athletes and families. We’re here for a bigger purpose than just this building, and we’ll see it through.”
Nevada Youth Sports expects to have a better understanding of the repair timeline by the end of the week. In the meantime, leaders say they’re grateful for the community support they’ve already received as they work to restore operations.
Nevada
U. Nevada Reno department merger will study social life via ‘intersectional, decolonial, humanistic’ lens | The College Fix
A ‘place where rigorous social research and critical, decolonial scholarship’ will occur
At the beginning of this month, the University of Nevada Reno merged its sociology department and Department of Gender, Race, and Identity to form the Department of Sociology and Cultural Analysis — dedicated to studying “social life” via “intersectional, decolonial and humanistic” methods.
According Nevada Today, the consolidation “reflects a long-recognized affinity between the two departments. Sociology and GRI share deep commitments to understanding social inequalities, the forces that produce and reproduce them, and the possibilities for transformation.”
The new department will be led by Professors Lydia Huerta (research interests include “critical communication pedagogy” and “feminist, gender and sexuality studies”) and Jared Bok (“globalization and transnationalism,” “religion, culture, organizations”) whom outgoing Dept. of Sociology Chair Marta Elliot (“prejudice, discrimination, stigma and well-being,” “sociology of mental health and illness”) said will “exceptionally well-position” the merger for the future.
The now-former Departments of Sociology and Gender, Race, and Identity taught students “to ask rigorous questions about race, gender, class, migration, health, labor, culture and power,” and the merger won’t change that, according to the report.
Huerta said the new department “will be a place where rigorous social research and critical, decolonial scholarship inform one another and where students graduate equipped to understand and change the world they inherit.”
The Department of Sociology and Cultural Analysis will offer “robust” selection of majors and minors including gender, race and identity, comparative ethnic studies, Indigenous studies, gender and queer studies, and social justice and conflict studies.
College of Liberal Arts Dean Casilde Isabelli said these programs “preserve [both former departments’] unique intellectual traditions while creating new opportunities for collaboration, innovation and student success.”
According to her faculty page, Huerta has written the journal articles “The Exigency of the Anti-Gender Agenda in Latin America: A Transnational Perspective” and “The Impacts of Anti-Genderism on Education in Brazil: Fear and Danger among Professors of Gender” among other publications.
Bok’s offerings include “Religious Exit Costs” and “The Arts in Sacred Spaces: How Religious Conservatism and Cultural Omnivorousness Influence Attitudes about Congregational Involvement in the Arts.”
MORE: U. Nevada Reno language guide warns against using ‘native Nevadan,’ offensive to indigenous people
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