Health
Family selling dream home to fund life-saving treatment for 5-year-old daughter
A family in Queensland, Australia, is faced with selling their dream home to raise money for their daughter’s life-saving therapy.
Tallulah Moon, 5, has been diagnosed with SPG56, a degenerative brain disease that is caused by a rare gene mutation.
Tallulah was a healthy, happy baby until shortly after her first birthday, when she suddenly began to lose her motor skills.
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“She was hitting all of her milestones, and then suddenly she experienced a really steep regression — her abilities sort of fell like an avalanche off the cliff, and it was terrifying,” Golden Whitrod, Tallulah Moon’s mother, told Fox News Digital during an on-camera interview.
Tallulah Moon (left) has been diagnosed with SPG56, an extremely rare neurodegenerative disease that worsens over time. Her mother, Golden Whitrod (right) is committed to finding and funding the genetic therapy to save her daughter. (Our Moon’s Mission/Golden Whitrod; Sara Climie Photography)
“She went from a little girl who was walking and talking to suddenly not even being able to sit up on her own, not being able to lift her arms above her shoulders or hold up her neck,” Whitrod said.
Swallowing and choking also became a concern.
“We’d gone from watching this beautiful child thrive at 14 months, to regressing to the abilities of a 4-month-old,” Whitrod recalled.
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Tallulah Moon was also terrified, unable to comprehend the loss of her abilities.
“I remember her looking at us as if to say, ‘Why can’t you help me?’” her mother said. “And I could feel that as a parent. I just didn’t know what to do.”
A devastating diagnosis
At first, Whitrod hoped there would be an easy fix for whatever was causing Tallulah’s decline.
After six months of testing and scans, doctors performed a genetic study known as whole genome sequencing (WGS), leading to Tallulah Moon’s diagnosis of SPG56 in August 2020.
Tallulah Moon, then age 3, is pictured at the family’s home in Darwin, Australia, which the family has put up for sale to fund their mission to cure their daughter of SPG56. (Our Moon’s Mission/Golden Whitrod)
SPG56 is a type of hereditary spastic paraplegia (HSP) that usually begins around age 1 or 2 and worsens over time, causing muscle weakness and gradually robbing children of the ability to walk, talk, stand and sit up, as seen in past cases.
In later stages, the disease can cause cognitive decline, seizures and even an inability to swallow.
SPG56 is one of the rarest types of HSP, affecting fewer than one in every million children, statistics show.
“We’d gone from watching this beautiful child thrive at 14 months, to regressing to the abilities of a 4-month-old.”
There is currently no cure for the disease.
“The doctors told us, ‘just love your baby,’” Whitrod said. “They said there was nothing they could do — that there were no treatments.”
A mother’s determination
After “coming out of the fog” post-diagnosis, Whitrod immersed herself in research, making connections with other families whose children were also living with rare genetic diseases.
One of those was Terry Pirovolakis, a Canadian father whose son was diagnosed with SGP50, a disease that is very similar to Tallulah Moon’s SPG56.
Pirovolakis immediately started researching to find a gene therapy that could help his son.
Whitrod (at left) met with scientists at genetic institutes and carefully built her own research team. (Our Moon’s Mission/Golden Whitrod)
After meeting with experts from around the world, he liquidated his life savings and paid a team of researchers to start developing the therapy. In 2022, after massive fundraising efforts, his son received the one-time treatment, which halted progression of the disease.
Following Pirovolakis’ lead, Whitrod met with scientists at genetic institutes and carefully built her own research team.
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Over a three-year period, the team created an experimental gene therapy for SPG56, which Whitrod calls a “massive win.”
The next step is for the therapy to go through clinical trials to make sure it’s safe and effective for the children who need it — but the cost is too high for the vast majority of families to cover.
It will require a staggering $3 million to manufacture the medication before it can be administered to Tallulah Moon in a clinical trial, according to Whitrod.
Chris (left), Finn (top), Golden and Tallulah Moon enjoyed a day at the beach on International Rare Disease Day 2023. (Our Moon’s Mission/Golden Whitrod)
“Unfortunately, the big pharmaceutical companies just aren’t interested in funding the research for these rare diseases, even though the treatments are possible,” she said.
“We realized that we have to fund this on our own if we want to do this.”
Parents Golden and Chris Whitrod with daughter Tallulah Moon, 5, who lives with the neurodegenerative disease SPG56 (Sara Climie Photography)
Walter Gaman, MD, founder of Executive Medicine of Texas, emphasized the financial burden that often comes with rare diseases.
“Rare diseases, by nature, account for a small market share, meaning that there are few customers to absorb the cost of bringing effective drugs to market,” Gaman, who is not affiliated with the Whitrod family, told Fox News Digital.
“We realized that we have to fund this on our own if we want to do this.”
In 2003, Deloitte reported that the average cost of bringing a drug to market exceeded $2 billion, according to Gaman.
“One of the most significant wins for orphan drugs came in 2017, when President Trump signed the Food and Drug Administration Reauthorization Act (FDARA) into law,” he noted.
“This was a huge win for orphan therapies because it expanded the FDA Rare Disease Program and also expedited the review process. As a result, 2018 saw a record 59 orphan drugs greenlighted. We need to build that momentum up once again.”
In 2003, the average cost of bringing a drug to market exceeded $2 billion.
There is still a lot of work to do, he noted.
“We need to bring orphan drugs to market, but we also need to look at ways of making these drugs more affordable to the end user,” Gaman said.
Some potential ideas are to offer tax breaks to companies that champion such drugs, or to have a tax on pharmaceutical companies that goes directly to the FDA Rare Disease Program, he suggested.
A ‘much bigger dream’
“We’re standing at the precipice of there being a treatment for Tallulah and for children in her position,” Whitrod said.
“We feel like we’re almost there. But, of course, $3 million for a little Aussie family is quite a lot.”
The Whitrods have launched a charitable foundation called Genetic Cures for Kids, with a fundraising initiative called Our Moon’s Mission.
The family has raised some funds through donations, but it’s only a fraction of what is needed to treat Tallulah Moon — hence their decision to sell their home.
The house, which is located in the suburb of Stuart Park, is scheduled to go up for auction this week.
Golden Whitrod (left), mother of Tallulah Moon, has built a research team to identify the medication for her daughter’s genetic disorder. (Our Moon’s Mission/Golden Whitrod)
“We’d hoped that some miracle would happen and we wouldn’t need to sell it, and that help would come before we needed to come to this crunch point,” Whitrod said.
“But in the end, we realized that’s our last asset that we have, and that could help us get to the finish line.”
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While they are sacrificing their family’s “dream home,” Whitrod says they are now aspiring to a “much bigger dream.”
“That is to give Tallulah the life she deserves — and we’re all in for that.”
While she is intent on saving her daughter, Whitrod has also set her sights on a wider goal — to help other families whose children are facing similar challenges. (Sara Climie Photography)
Meanwhile, Whitrod said, Tallulah Moon is working to fight the neurodegenerative disease through physiotherapy, occupational therapy and speech therapy.
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While she is intent on saving her daughter, Whitrod has also set her sights on a wider goal — to help other families whose children are facing similar challenges.
Golden Whitrod is pictured with her daughter, Tallulah Moon, a 5-year old living with the rare neurodegenerative disease SPG56. (Sara Climie Photography)
“What we’re creating is not just a treatment for Tallulah that ends with the kids with SPG56 — we’re creating a replicable framework, so the researchers can go on to create treatments for other similar diseases,” she said.
“If we can get there in time, then we can help Tallulah live the life she deserves — and not just her, but also lots of children just like her.”
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For women over 60, muscle strength plays a critical role in longevity, a new study confirms.
Researchers at the University at Buffalo, New York, followed more than 5,000 women between the ages of 63 and 99, finding that those with greater muscle strength had a significantly lower risk of death over an eight-year period.
The findings were published in JAMA Network Open.
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Muscle function was measured using grip strength and how quickly participants could complete five unassisted sit-to-stand chair raises.
These are two tests commonly used in clinical settings to evaluate muscle function in older adults, the researchers noted.
A recent study shows that stronger muscle strength in women over 60 is linked to a lower risk of death over eight years. (iStock)
“In a community cohort of ambulatory older women, muscular strength was associated with significantly lower mortality rates, even when we accounted for usual physical activity and sedentary time measured using a wearable monitor, gait speed and blood C-reactive protein levels,” study lead author Michael LaMonte, research professor of epidemiology and environmental health at the University at Buffalo, told Fox News Digital.
“Movement is the key — just move more and sit less.”
Many earlier studies did not include those objective measurements, making it difficult to determine whether muscle strength itself was linked to longevity, according to LaMonte. “Our study was able to better isolate the association between strength and death in later life,” he added.
Even for women who don’t get the recommended amount of aerobic physical activity, which is at least 150 minutes per week, muscle strength remained important for longevity, the researchers found.
Women with greater muscle strength were more likely to live longer, even if they did not meet the recommended amount of aerobic exercise. (iStock)
“The findings of lower mortality in those who had higher strength but were not meeting current national guidelines on aerobic activity were somewhat intriguing,” LaMonte said.
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Federal guidelines recommend strengthening activities one to two days per week, targeting major muscle groups.
Resistance training does not have to require a gym membership, LaMonte noted. These exercises can be performed using free weights, resistance bands, bodyweight movements or even household items, such as soup cans.
Experts recommend working major muscle groups one or two days a week using weights, bands or bodyweight exercises. (iStock)
“Movement is the key — just move more and sit less,” he said. “When we can no longer get out of the chair and move around, we are in trouble.”
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LaMonte acknowledged several limitations of the study. The researchers assessed muscle strength in older age but did not explore how earlier levels in adulthood might influence long-term health outcomes.
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“We were not able to understand how strength and mortality relate in younger ages,” he said, noting that future research should explore whether building strength earlier could have an even greater impact on longevity.
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Compounds found in cannabis could provide a new roadmap for treating the world’s most common chronic liver disorder, according to a study released by the Hebrew University of Jerusalem.
The research, published in the British Journal of Pharmacology, found that cannabidiol (CBD) and cannabigerol (CBG) significantly reduced liver fat and improved metabolic health in experimental models.
CBD is the more widely studied non-intoxicating cannabinoid, while CBG is a less common “precursor” cannabinoid from which CBD is formed.
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Unlike THC, the primary psychoactive component in cannabis, these compounds do not produce a “high,” making them viable candidates for long-term medical treatment, the study suggests.
Metabolic dysfunction-associated steatotic liver disease (MASLD) currently affects approximately one-third of the global adult population, according to health data.
Metabolic dysfunction-associated steatotic liver disease (MASLD) currently affects approximately one-third of the global adult population. (iStock)
The condition, which is closely linked to obesity and insulin resistance, has few approved pharmaceutical treatments, the researchers said, leaving patients to rely largely on lifestyle changes that can be difficult to maintain.
“Our findings identify a new mechanism by which CBD and CBG enhance hepatic energy and lysosomal function,” said lead study author Joseph Tam, director of the Multidisciplinary Center for Cannabinoid Research at Hebrew University, in a press release.
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The study highlights a process called “metabolic remodeling,” in which the cannabis compounds created a “backup battery” for the liver by increasing levels of phosphocreatine, a high-energy molecule stored in muscle cells.
This energy reserve helps the organ function under the stress of a high-fat diet, which was an unexpected discovery, the team noted.
Researchers focused on CBD and CBG, two non-psychoactive compounds that offer therapeutic benefits without the “high” associated with THC. (iStock)
The researchers also found that CBD and CBG restored the activity of “cellular cleaning crews” known as cathepsins, enzymes that work within the cell’s recycling centers to break down harmful fats and waste.
With this process, the liver was better able to clear out dangerous lipids, including triglycerides and ceramides, which are known to trigger inflammation, the study showed.
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While both compounds were effective, CBG showed more robust results in certain areas, such as reducing total body fat mass, lowering “bad” LDL cholesterol and improving insulin sensitivity.
Researchers say this study opens a new path for using plant-based compounds to treat metabolic diseases by focusing on how cells manage energy and waste.
The discovery of a phosphocreatine “backup battery” in the liver marks a significant shift in how scientists understand the organ’s ability to survive high-fat diets. (iStock)
Limitations and caveats
Despite the promising results, the research team cautioned that the study was conducted in a controlled experimental environment. Further clinical trials are necessary to determine the proper application for human patients.
Other recent studies have pointed to potential issues with using cannabis as a medical tool.
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A major analysis published in JAMA examined more than 2,500 scientific papers from the last 15 years, including other reviews, clinical trials and guidelines focused on medical marijuana.
The 2025 review highlighted significant gaps between public perception and scientific evidence regarding cannabis’ effectiveness for most medical conditions.
Other recent studies have pointed to issues with the efficacy of cannabis as a medical tool. (iStock)
The researchers concluded that there are very few conditions for which cannabinoid therapies have clear, well-established benefits backed by high-quality clinical data.
“Whenever a substance is widely used, there is likely to be a very wide set of outcomes,” Alex Dimitriu, MD, who is double board-certified in psychiatry and sleep medicine and founder of Menlo Park Psychiatry & Sleep Medicine, previously told Fox News Digital. “This study points to the reality that this widely used substance is not a panacea.”
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The strongest evidence supports FDA-approved cannabinoid medications for treating specific conditions, including HIV/AIDS-related appetite loss, chemotherapy-induced nausea and vomiting, and certain severe pediatric seizure disorders, according to the review.
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Anyone interested in using marijuana for medical purposes should speak to a healthcare provider to discuss potential risks and benefits.
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While cannabis has recently come under fire for potential negative health risks, a recent study suggests that its use could increase brain volume and cognitive fitness.
Researchers at the University of Colorado Anschutz Medical Campus analyzed cannabis usage, brain scans and cognitive test results for more than 26,000 adults between the ages of 40 and 77, using data from the UK biobank.
The study found that cannabis users — particularly those who reported moderate lifetime usage — showed larger volumes in several brain regions.
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“Compared to individuals with no history of cannabis use, those who reported using cannabis showed larger volumes in several brain regions characterized by a high density of cannabinoid (CB1) receptors — regions involved in processes such as memory, information processing and emotion regulation,” lead study author Anika Guha, Ph.D., a researcher at the University of Colorado Anschutz Medical Campus, told Fox News Digital.
A recent study suggests that cannabis use could increase brain volume and cognitive fitness. (iStock)
The cannabis users also scored better on cognitive tests that measured learning, processing speed and executive function.
This outcome differs from many previous studies, which have focused on short-term cognitive impairment during or shortly after cannabis use, the researcher pointed out.
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“These findings suggest that the relationship between cannabis and the brain may differ across the lifespan, and that moderate use in mid-to-later adulthood may be associated with positive brain health outcomes,” Guha said.
Not all areas of the brain showed positive effects among cannabis users. The posterior cingulate, which is involved in self-reflection and memory, had lower volume with higher marijuana use.
“The takeaway is not that people should start using more cannabis based on these findings alone.”
As cannabis has been rising in popularity among all ages, this type of study is important for understanding its long-term effects and the pros and cons of use, according to Matt Glowiak, Ph.D., chief addiction specialist with Recovered, an organization that provides information and resources for mental health and addiction treatment.
The drug’s effects likely depend on factors such as age, dose, frequency, product composition and individual vulnerability. (AP Photo/Martin Meissner, File)
“Given the connection between cannabis use and larger brain volume, it is believed that it may help [older] individuals retain cognitive function that might otherwise naturally decline,” Chicago-based Glowiak, who was not involved in the study, told Fox News Digital.
“This is a huge benefit, but one we need to explore a bit further, ahead of encouraging those who would otherwise not consider integrating cannabis into their healthcare regimen.”
Limitations and caveats
As the study was observational in nature, it could not prove that cannabis use improves brain health — instead, it only showed an association, according to Dr. Marc Siegel, Fox News senior medical analyst, who was not involved in the study.
“The preponderance of previous evidence does not line up with improved cognitive function from chronic cannabis use,” Siegel told Fox News Digital. “This study is an outlier, and though it cannot be ignored, it is not justification for use.”
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The study also relied on the UK Biobank, which offers a “large and rich dataset,” Guha said — but it is limited to the questions that were originally posed to the participants.
“In particular, we have only a broad measure of how many times someone has used cannabis over their lifetime,” she said. “We do not have access to details about how they used cannabis, such as whether they smoked or used edibles, the type or potency of cannabis, or when in their life they used most heavily.”
Cannabis users scored better in learning, processing speed and executive function. (iStock)
“Those details likely matter a great deal for understanding how cannabis affects the aging brain.”
Given these limitations, Guha suggests that the findings should be seen as an early indicator that cannabis use may be related to brain aging, “and as a starting point for more targeted research that can tease apart these relationships.”
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“The takeaway is not that people should start using more cannabis based on these findings alone,” she emphasized. “While cannabis may have potential benefits in some contexts, a substantial body of research also documents important risks, underscoring that cannabis is neither completely beneficial nor completely harmful.”
The drug’s effects likely depend on factors such as age, dose, frequency, product composition and individual vulnerability, according to Guha.
“Given the widespread use and legalization of cannabis, it would be great to know that it is net-positive for brain health — however, this feels too good to be true, and too early to claim,” one expert said. (AP)
“As with any substance, individuals should consult with a healthcare provider before initiating use, particularly if they have a history of mental health concerns, as THC (the primary psychoactive component of cannabis) can exacerbate symptoms such as psychosis in vulnerable individuals,” she added.
Dr. Alex Dimitriu, who is double board-certified in psychiatry and sleep medicine and the founder of Menlo Park Psychiatry & Sleep Medicine, reiterated that this study is an “outlier,” as most previous research has shown “detrimental effects” from cannabis use.
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“Given the widespread use and legalization of cannabis, it would be great to know that it is net-positive for brain health — however, this feels too good to be true, and too early to claim,” he said. “I would advise proceeding with caution and moderation.”
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Dimitriu agreed that more large-scale studies and review papers are needed to get a “clearer picture.”
“What this cannabis study shows is that there may be conflicting information, which warrants more investigation.”
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