Parents fight for a cure, plus viral outbreaks and benefits of weekend sleep

A MOTHER'S MISSION – Rebekah Lockard of Colorado is frantic to save the clinical trial that could cure her daughter's rare disease — and it's largely up to her to raise the funds. Continue reading…

‘PERSONAL CHOICE’ – Here's why more Americans have a growing distrust of the COVID-19 vaccine, according to doctors. Continue reading…

COMMITTED TO A CURE – A Canadian father created a drug to save his son from a rare disease — and now other families are desperate to get the treatment. Continue reading…

THRIVING WITH ANXIETY – An expert offers her tips on embracing the mental health condition and using it to one's advantage. Continue reading…

DANGEROUS COMPLICATION – Sepsis is now the third-deadliest condition in the U.S., behind heart disease and cancer. Experts share symptoms, treatments and prevention tips. Continue reading…

‘RARE BUT SERIOUS’ - As a New Hampshire man fights for his life, experts share warnings about Eastern equine encephalitis (EEE), a potentially deadly mosquito-borne disease. Continue reading…

MATTERS OF THE HEART – A single blood test could predict women's heart attack risk up to 30 years in advance, researchers say. Continue reading…

‘SLOTH FEVER’ – The CDC issued an alert about cases of Oropouche virus, also known as sloth fever, in travelers returning from Cuba. Here's what to know. Continue reading…

SEASONAL WELLNESS – These 7 health products can help you breathe easier, avoid allergies and support your immune system. Continue reading…

WEEKEND CATCH-UPS – Sleeping longer on weekends could lower heart disease risk by 20%, a new study finds. Sleep experts discuss the potential benefits. Continue reading…

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Breast cancer screenings may decline for women who receive false-positive test results, says study

High rates of false positive test results may be keeping women from sticking to recommended mammogram screenings for breast cancer, a new study has found.

Researchers from UC Davis Comprehensive Cancer Center in Sacramento, California, reviewed more than 3.5 million screening mammograms performed among more than one million women between 2005 and 2017.

Women who received a true-negative result were more likely to return for future screenings, with a 77% compliance rate.

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By comparison, among those who received a false positive, only 61% returned for another mammogram in six months, and 67% returned for a recommended biopsy. (A false positive occurs when a mammogram shows an abnormal result that is investigated further, but does not lead to a cancer diagnosis.)

The women, who ranged in age from 40 to 73, had not previously received a breast cancer diagnosis.

The study findings were published in the Annals of Internal Medicine on Sept. 3.

"We found that women were less likely to return for another screening mammogram if they were recalled for additional imaging that did not result in a cancer diagnosis, especially if that recall resulted in a recommendation for a short-interval follow-up or biopsy or if they experienced false-positive exams on two consecutive screening mammograms," lead study author Dr. Diana Miglioretti, a professor and division chief of biostatistics in the UC Davis School of Medicine's Department of Public Health Sciences, told Fox News Digital.

SENIORS AND BREAST CANCER: WHY AREN’T OLDER WOMEN TOLD TO GET MAMMOGRAMS?

Miglioretti said she was surprised by the findings, as surveys have suggested that women believe they would be just as likely to continue screening even after a false-positive result.

"However, something about the experience seems to influence their actual behavior, and despite their intentions to return, some do not," she added.

Another surprising element, Miglioretti said, was that a false-positive recommendation for a short-interval follow-up — meaning the patient needs to return in six months for diagnostic imaging to evaluate changes in the abnormal finding — had the greatest impact on a woman's likelihood of not returning for future screenings.

"I initially expected that the probability of returning would be lowest for those who had undergone a benign biopsy," she said. 

"However, even after following women for five years after a false-positive result, women who received a short-interval follow-up recommendation were the least likely to return for future screening mammograms."

Asian and Hispanic/Latinx women were least likely to return for future screenings after a false positive.

BREAST CANCER MAMMOGRAM SCREENINGS SHOULD START AT AGE 40 INSTEAD OF 50, SAYS HEALTH TASK FORCE

"This is extremely concerning, as recent trends have conveyed a much faster rate of growth in breast cancer rates in this demographic than in other ethnic and racial groups," Dr. Tingting Tan, MD, PhD, a medical oncologist and hematologist at City of Hope Newport Beach in California, told Fox News Digital.

(Tan was not involved in the study.)

"There is a 52% rise in breast cancer rates in the last two decades among Asian-American and Pacific Islander women under the age of 50."

A false positive occurs when a mammogram shows an abnormal result that is investigated further, but does not lead to a cancer diagnosis.

"Following the mammogram, the results will either come back as clear (known as a true negative) or will be flagged for additional testing," Tan said.

Some common causes of false positives, according to UC Davis, include dense breast tissue, small calcium deposits in the breast, overlapping breast tissue that creates shadows, or normal variations in breast tissue.

False-positive results occur in 10% to 12% of mammograms for women between 40 and 49 years of age, UC Davis noted.

SOME BREAST CANCER PATIENTS COULD BE AT RISK OF ANOTHER TYPE OF CANCER, STUDY REVEALS

Within a decade of annual screenings, up to 60% of women experience at least one false positive result.

As a breast cancer specialist, Tan said she often hears the term "scanxiety" to describe the fear that is associated with imaging. 

"Even a slight possibility of being diagnosed with cancer can be debilitating, and we understand that the follow-up check-ups after an abnormal mammogram can take an emotional toll," she said.

"While it can be distressing to not have a true negative from that initial mammogram, patients should not worry if their doctor orders a breast ultrasound following a mammogram, as it is a very common procedure."

Asking questions and having open communication with health care providers can help to ease stress and anxiety when there is follow-up to an abnormal screening, Tan added.

Based on these findings, the researchers emphasized that women who receive false-positive results should continue screening every one to two years.

"A false positive — particularly if it leads to a diagnosis of benign breast disease — is associated with a small increase in developing breast cancer in the future," Miglioretti said.

"If women have concerns about their false-positive result or are unclear of what it means, they should talk with their doctor."

Women should also be aware that a screening test often requires further diagnostic evaluation to confirm that a finding is normal, the doctor added.

"This is a standard part of the screening process," Miglioretti told Fox News Digital.

"Approximately 10% of screening mammograms require diagnostic work-up, and most women called back for further imaging do not have breast cancer."

Tan emphasized the importance of mammograms as the "gold standard" for breast screening.

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"Mammograms can catch cancer at early stages, before symptoms," she told Fox News Digital.

"They are proven to decrease mortality, which is why almost every patient will begin with a screening mammogram."

The researchers only evaluated false positives on the two prior screening mammograms for each woman, the researchers noted.

"Women could have had false-positive mammograms prior to that," Miglioretti noted.

The study was also limited to 177 facilities participating in the Breast Cancer Surveillance Consortium (BCSC), which means some women could have received care at non-BCSC facilities.

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"Cancer is highly complex, and it is essential to see a radiologist who specializes in reading mammograms," Tan advised.

"Early detection is key for better outcomes, which is why it is so important to know your breast cancer risk and to get your regular screenings."

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Sepsis a top killer in US behind heart disease, cancer: What to know, how to avoid the condition

"Real Housewives of Orange County" star Vicki Gunvalson, 62, is sharing her recent health scare after she was hospitalized with sepsis, a potentially deadly disease that results from the body’s response to an infection.

"This entire health scare came unannounced — with no warning," Gunvalson told Fox News Digital.

As Sepsis Awareness Month kicks off this September, Gunvalson’s timely story is helping to raise awareness of the illness.

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"Sepsis awareness can and does save lives, yet only 65% of American adults have ever heard of it," Selena A. Gilles, clinical professor and associate dean at New York University Rory Meyers College of Nursing, told Fox News Digital.  

Gilles is on the advisory board of the Sepsis Alliance, a California-based organization that works across the country to decrease suffering from sepsis. 

"Prompt recognition and treatment can be of great importance in preventing significant illness and even mortality," Dr. Aaron Glatt, chief of infectious diseases at Mount Sinai South Nassau Hospital on Long Island, New York, told Fox News Digital. 

Gunvalson shared the details of her sepsis diagnosis with Fox News Digital.

"Two weeks ago, when I was heading to my office, I was very delirious and unclear on where I was going," Gunvalson said via email.

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"Once I got into the office, my staff realized I was not acting normal," she went on. "My assistant thought that I was possibly having a stroke."

The emergency room diagnosed Gunvalson with a "sinus disease" and sent her home, but by the next morning, she was "extremely incoherent" — so her boyfriend took her back to the hospital.

"I was admitted for six days with sepsis and pneumonia," she said. 

Gunvalson was treated with a course of antibiotics and is now recovering at home, while staying in regular contact with the sepsis team at the hospital. 

OHIO WOMAN WHO LOST ALL FOUR LIMBS TO FLU COMPLICATIONS SPEAKS OUT TO RAISE AWARENESS

The reality TV star has experienced some memory loss and difficulty concentrating, but said she hopes the "brain fog" will improve over time.

In retrospect, the sepsis may have stemmed from a sinus infection two months ago that was treated by multiple rounds of antibiotics, Gunvalson said.

Common symptoms of sepsis include fever, chills, rapid heart rate, confusion, shortness of breath, extreme pain, and clammy or sweaty skin, according to Gilles.

A high fever – especially in those who are at increased risk of infection and are feeling extremely unwell – should warrant seeking medical attention as soon as possible, Glatt added.

"Fatigue and lethargy in the setting of infection can be a sign of pneumonia and potential sepsis, even without overt pulmonary symptoms," Dr. Marc Siegel, Fox News' senior medical analyst and clinical professor of medicine at NYU Langone Medical Center, told Fox News Digital. 

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As sepsis can start within hours, Gilles suggested following the acronym "TIME" to remember that time is of the essence when it comes to seeking treatment.

T - Temperature (higher or lower than normal)

I - Infection (know the signs and symptoms)

M - Mental decline (confusion, sleepiness and difficulty awakening)

E - Extremely ill (severe pain, discomfort and shortness of breath)

Approximately 1.7 million adults are diagnosed with sepsis every year in the U.S., according to the Centers for Disease Control and Prevention (CDC).

The illness kills 350,000 American adults each year and is a leading cause of death in U.S. hospitals, Gilles noted. 

It is the third-leading killer behind heart disease, which takes just over 700,000 lives each year, and cancer, which causes more than 600,000 annual deaths, per CDC data.

"Sepsis takes a life every 90 seconds — that’s more lives than opioids, breast cancer, prostate cancer and stroke combined," she said.

Many people mistakenly assume that sepsis is an infection.

"Sepsis is the body’s overwhelming and life-threatening response to infection, which can lead to tissue damage, organ failure and death," Gilles said. 

The condition can come after any infection — whether just a scrape or cut, a dental procedure or surgery, or even a [bacteria], fungus or parasite — triggers a "chain reaction" in the body, the doctor added.

Another common myth is that sepsis only occurs in those who are (or were recently) hospitalized.

Most cases of sepsis, around 87%, start before a patient enters the hospital, Gilles said.

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"Community-acquired infections, such as urinary tract infections, pneumonia and even simple cuts or scrapes can lead to sepsis if not treated properly," Gilles noted.

Many people also think sepsis only affects immunocompromised people.

"Sepsis can strike almost anyone at almost any time," Glatt said.

"While certain individuals are at higher risk of getting a severe infection that can even be deadly, serious infections can strike even a perfectly healthy young person with rare but potentially fatal consequences," he went on.

Older adults, infants and those with chronic illnesses or weakened immune systems are at a higher risk, however.

The first step is discovering the underlying cause of the infection, according to the CDC.

Sepsis often starts in the gastrointestinal tract, lungs, skin or urinary tract.

Treatment will vary based on the underlying infection, but often involves administering antibiotics as soon as possible.

"While antibiotics are crucial for treating an underlying bacterial infection, managing sepsis often requires a comprehensive approach — including fluids, medications to support blood pressure, and sometimes surgery or [a ventilator], depending on the severity," said Gilles.

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Surgery is sometimes necessary to remove tissue damaged by the infection, the CDC states.

It’s also important to maintain blood flow to the organs, often with fluids.

"If you suspect sepsis, seek medical attention right away," Gilles advised.

The risk can be reduced by quickly identifying and managing infections, according to the doctor.

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Added Gilles, "It can also be prevented by practicing good hygiene, staying current with vaccinations, staying in good health, keeping cuts clean and dry, and promptly seeking treatment when infections are suspected."

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What is EEE, the mosquito-borne disease that killed a New Hampshire man?

A rare, potentially deadly mosquito-borne disease has sparked concern in the Northeastern U.S.

Last week, a man from Hampstead, New Hampshire, died after testing positive for Eastern equine encephalitis (EEE).

The man "was hospitalized due to severe central nervous system disease, and has passed away due to [the] illness," according to a statement from the New Hampshire Department of Health and Human Services (DHHS).

NEW HAMPSHIRE RESIDENT DIES AFTER EEEV INFECTION, AS RARE, LETHAL MOSQUITO-BORNE VIRUS SPREADS IN NEW ENGLAND

Another New Hampshire man, Joe Casey, is currently in the ICU on a ventilator after contracting three mosquito-borne illnesses, including EEE, according to local reports.

In late August, four Massachusetts towns — Douglas, Oxford, Sutton and Webster — set a voluntary evening lockdown in an attempt to curb the spread of the virus.

That decision came after the Massachusetts Department of Public Health (DPH) confirmed the first human case of Eastern equine encephalitis (EEE) since 2020 in Worcester County, affecting an elderly man in Oxford.

NORTHEASTERN TOWNS ISSUE VOLUNTARY LOCKDOWN TO PREVENT SPREAD OF MOSQUITO-BORNE DISEASE

As of Aug. 27, the Centers for Disease Control and Prevention (CDC) has reported four total cases of the virus in 2024, although that data is subject to change.

There were seven cases reported in 2023, one case in 2022, five in 2021 and 13 in 2020.

The year 2019 saw a spike, with 38 cases reported.

Eastern equine encephalitis is caused by a virus that is spread through the bite of an infected mosquito, according to the CDC, which describes EEE as a "rare but serious disease."

Only a few cases are reported in the U.S. each year, most in the Eastern or Gulf Coast states.

Humans and other animals that contract the virus are considered "dead-end hosts," the CDC states, which means they can’t spread it to mosquitoes that bite them.

"While EEE is widespread in the Western Hemisphere, it normally affects animals such as large mammals, birds, reptiles and amphibians, and rarely causes clinical infection in human beings," Dr. Eyal Leshem, director of the Center for Travel Medicine and Tropical Diseases at Sheba Medical Center in Israel, told Fox News Digital.

While EEE was previously "very uncommon" in the U.S., there is the potential for these types of viruses to become more prevalent across the country, according to Dr. Edward Liu, chief of infectious diseases at Hackensack Meridian Jersey Shore University Medical Center.

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"As warm seasons get longer, mosquitoes have more time to breed," Liu told Fox News Digital. 

"If heavy rains cause standing pools of water, that will create an environment for larger mosquito populations."

Dr. Marc Siegel, senior medical analyst for Fox News and clinical professor of medicine at NYU Langone Medical Center, confirmed that the virus has been "exceedingly rare, though "frequently disabling (neurologically) and deadly."

He also told Fox News Digital, "I don't think it will become a problem, as it is very rare, with just a few cases per year, but the fear of it is spreading."

Common symptoms of EEE include fever, vomiting, diarrhea, headache, stiff neck, seizures, behavioral changes and drowsiness, per the CDC.

These usually appear five to 10 days after being bitten.

The disease can be deadly, resulting in fatalities for 30% of infected people.

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"Sometimes patients exhibit a change in mental status or other neurological symptoms, which are linked to inflammation in their meninges (membranes that protect the brain and spinal cord) or their brains," said Leshem. 

Older people and those who are immunocompromised are at the highest risk for mosquito-borne encephalitis.

The disease is also more dangerous if it occurs in tandem with other viral infections that cause encephalitis, according to Liu.

"We know ticks can carry more than one pathogen, so it would be concerning if mosquitoes carry more than one pathogen," he said.

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The only treatment for EEE is supportive care to manage symptoms.

"There is no specific drug or antiviral that has proven effective in treating EEE," Leshem said. 

There is also no vaccine available for Eastern equine encephalitis. 

For more Health articles, visit www.foxnews.com/health

"Testing for encephalitis is still not very available outside of hospitals, and sometimes not accurate," Liu warned.  

"It would not be surprising if its testing confused two similar viruses, as the antibody testing we use is not always accurate."

Protecting against mosquito bites is the best way to prevent infection, experts agree.

"We need to make sure that mosquito control programs stay strong," said Liu.  

"We cannot rely on each homeowner to pay for mosquito control services. In New Jersey, mosquito control is county-based and therefore at the mercy of the county budget."

The CDC recommends using insect repellent, wearing long-sleeved shirts and pants, and treating clothing and gear with permethrin, which is an insecticide that kills or repels mosquitoes.

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Taking steps to control mosquitoes indoors and outdoors can also help prevent infection, the agency states on its website.

Some recommended strategies include using screens on windows and doors, using air conditioning when possible, and eliminating standing water where mosquitoes tend to lay their eggs.

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New surgical technology can ‘light up’ bacteria in wounds, helping to prevent infections

Up to 5% of people who have surgery can develop an infection — which can prolong healing and lead to dangerous complications, studies have shown. 

Additionally, chronic wounds affect around 6.5 million patients in the U.S.

Some bacteria can’t be seen with the human eye, which means they may be missed by physicians when cleaning a wound. 

Now, a new medical technology that uses fluorescent light has shown to be effective in detecting missed bacteria, according to new research led by University of Southern California, Los Angeles (USC).

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In a review of 26 medical studies, a handheld device using autofluorescence (AF) imaging successfully "lit up" bacteria in nine out of 10 wounds, with each different type of bacteria turning a different color, according to a press release from USC.

The findings were published recently in the medical journal Advances in Wound Care.

In traditional cases, surgeons take tissue samples from wounds and send them to a lab for testing to determine the types of bacteria that are present, the researchers noted.

It can take days to get the results, during which time infection can set in.

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"Bacteria can cause wounds to become infected when they enter and colonize the cut or wound," Dr. Raj Dasgupta, pulmonary and critical care specialist at Huntington Health in Los Angeles, told Fox News Digital. 

"If a person does not receive treatment for a wound infection, the infection can spread to other parts of the body, which may lead to serious complications." (Dasgupta was not involved in the new study.)

The lighting technology allows clinicians to see bacteria in real time, leading to more targeted and effective wound care, according to the study researchers.

"Fluorescence imaging, particularly with devices like MolecuLight, offers a significant advancement in the ability to detect bacterial loads in chronic wounds, such as diabetic foot ulcers," lead study author Dr. David G. Armstrong, professor of neurological surgery and director of the ​U​SC Limb Preservation Program, told Fox News Digital.

It could also help prevent the need for antibiotics, as the bacteria can be removed before infection occurs.

"The study also explores the potential of wearable fluorescence imaging devices, which could further revolutionize surgical debridement by providing continuous visualization during the procedure," Armstrong added.

One of the most surprising discoveries in the study was that high amounts of bacteria didn’t always cause symptoms, but still slowed down the healing process, the researchers stated.

This highlighted the need for "more sophisticated diagnostic tools" in wound management.

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"The big idea here is that we might be able to get out in front of an infection before having to give someone antibiotics," said Armstrong. "This is the ultimate kind of stewardship to promote superbugs."

Based on this study, Armstrong recommends that clinicians consider integrating fluorescence imaging into their standard wound care protocols, especially for chronic wounds like diabetic foot ulcers. 

"This technology not only improves the accuracy of debridement, but also aids in early intervention, potentially reducing the risk of complications like infections and amputations," he told Fox News Digital. 

"We also recommend that health care providers stay informed about advancements in wearable imaging technologies, which may soon provide even greater flexibility and precision in wound care."

Dr. Patrick Davis, a facial plastic surgeon at Davis Facial Plastics in Beverly Hills, California, emphasized the importance of preventing bacterial infections — especially for revision rhinoplasties, which he said have a higher risk of this type of complication.

"There has been modest research with the use of fluorescence to illuminate a particular wound bed," Davis, who was not involved in the new study, told Fox News Digital. 

"The idea is that certain bacteria will emit a certain wavelength of light. Staph infections, for example, would emit a different color than another type of bacteria."

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This can be helpful in confirming what kind of antibiotic to use for treatment, Davis noted, while also telling the surgeon the "burden of bacteria," which indicates the level of bacteria in the wound.

The use of this technology still needs more research, according to the surgeon.

"At this time, this technology would not replace a simple swab of the area and then a laboratory test determining exactly what type of bacteria is present and what antibiotic to use," he said.

"However, this technology can give a real-time hint at the family of bacteria that is present, although it may not be so specific — that is still reserved for a laboratory to determine."

Dasgupta agreed that this device could be a "safe, effective, accurate and easy-to-use tool" to improve the assessment of wounds, but he noted that fluorescent light imaging has some limitations when used to detect bacterial infections.

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"The evaluation is limited to bacteria that produce fluorescent molecules on the skin's surface and subsurface," Dasgupta told Fox News Digital.

"The detection ability is also dependent on the number of bacteria present in the wound," he went on. "Also, wound depth cannot be captured with this type of evaluation."

The primary limitation of this study is that it depended on "controlled lighting conditions" in order for the fluorescence imaging devices to function accurately, Armstrong noted.

For more Health articles, visit www.foxnews.com/health

"This could be a challenge in certain clinical settings, particularly in real-time surgical environments," he said.

More research is also needed to confirm the effectiveness of wearable devices compared to the existing handheld devices.

The study is partially funded by the National Institutes of Health, the National Institute of Diabetes and Digestive and Kidney Diseases, and the National Science Foundation’s Center to Stream Healthcare in Place.

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Father created a drug to save his son from a rare disease, now other families are desperate to get it

When his infant son was diagnosed with a rare, fatal disease, a Canadian father was dismayed to discover there was no treatment or cure. So he set out to make one himself.

Terry Pirovolakis, an IT director in Toronto, Ontario, welcomed his third son in Dec. 2017. It was a "normal, healthy birth," he told Fox News Digital — but within six months, he and his wife, Georgia Pirovolakis, noticed their baby, Michael, was not lifting his head.

"He just didn’t seem like he was meeting his milestones," Pirovolakis said.

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After months of doctors’ appointments, physiotherapy and genetic testing — what Pirovolakis describes as an "18-month diagnostic odyssey" — a neurologist diagnosed baby Michael with spastic paraplegia 50 (SPG50), a neurological disorder that affects fewer than 100 people in the world.

"They told us to just go home and love him — and said he would be paralyzed from the waist down by age 10, and quadriplegic by age 20," Pirovolakis said.

"They said he’d never walk or talk, and would need support for the rest of his life."

Spastic paraplegia 50 (SPG50) is a neurological disorder that affects a child’s development, gradually leading to cognitive impairment, muscle weakness, speech impairment and paralysis, according to the National Organization for Rare Disorders.

Most people with the disease will die by the time they reach their 20s.

"Children with SPG50 may experience early developmental delays, muscle weakness and spasticity, but they continue to strive and adapt," Dr. Eve Elizabeth Penney, an epidemiologist at the Texas Department of State Health Services and medical contributor for Drugwatch, told Fox News Digital. 

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"Over time, these symptoms can worsen, making it hard for affected individuals to walk and perform daily activities," added Penney, who was not involved in Michael Pirovolakis’ care.

"The prognosis varies from person to person, but it’s generally a progressive condition, meaning symptoms can become more severe over time," she also said. 

In the absence of a cure, most families can only manage symptoms through physical therapy, occupational therapy, speech therapy and medications to help control spasticity or seizures, Penney said. 

"Managing SPG50 requires a comprehensive, multidisciplinary approach to address its various symptoms and challenges," she added.

There is no treatment currently approved by the U.S. Food and Drug Administration (FDA) for SPG50.

After the shock of the diagnosis, Pirovolakis immediately started researching, with a focus on finding a gene therapy that could help his son.

A month after his baby’s diagnosis, Pirovolakis flew to Washington, D.C., for a gene therapy conference, where he met with several experts. He also visited Sheffield, England, and the National Institutes of Health at the University of Cambridge, where scientists had been studying the disease. 

"We then liquidated our life savings, refinanced our home and paid a team at the University of Texas Southwestern Medical Center to create a proof of concept to start Michael's gene therapy," Pirovolakis said.

After successful tests showed the gene therapy was effective at stopping the disease’s progression in mice and in human cells, Pirovolakis worked with a small drug company in Spain to manufacture the drug.

On Dec. 30, 2021, Health Canada granted approval to move forward with the gene therapy for Michael Pirovolakis. 

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"On March 24, 2022, my son was the first person to ever get treated with gene therapy at SickKids in Toronto," Pirovolakis said.

The procedure, which involves injecting cerebral spinal fluid through a lumbar puncture, does come with risks — but the potential benefits are life-saving.

After Michael Pirovolakis received the one-time treatment, there were three more doses left.

"We decided that we had to help other kids," Pirovolakis said.

"When I heard that no one was going to do anything about it, I had to — I couldn't let them die."

Pirovolakis opened up a Phase 2 study in the U.S., which treated three children two years ago. 

One of those was 6-month-old Jack Lockard, the youngest child to ever receive the treatment.

"Jack has thrived since then," Rebekah Lockard, the boy’s mother, told Fox News Digital.

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"He is sitting independently, banging toys together, drinking from a straw cup and working really hard on crawling."

She added, "Doctors and therapists share the same sentiment: The treatment works!"

Other children who participated in the trial have experienced similar results, Lockard said.

"They've all shown that their disease has stopped progressing and their cognition has improved."

There are more children who still need the treatment — including Lockard’s first child, 3-year-old Naomi, who also has SPG50 — but are unable to access it because the clinical trial has now run out of money, as Fox News Digital previously reported. 

It costs about $1 million to make the drug for each child, Pirovolakis said, and another $300,000 or so to treat the patient in the U.S. at the hospital. 

Pirovolakis has approached pharmaceutical companies, but all of them have declined to manufacture the drug.

"No investor is going to give you money to treat a disease that is not going to make money," he said. "That's the dilemma we're in."

While Pirovolakis and his team are actively working to secure grants and investors, it’s largely up to the parents to raise funds for the next phase of the clinical trial.

So far, Lockard has raised more than $90,000 via GoFundMe (called "Naomi and Jack Battle SPG50") to get her daughter’s treatment, but that is only a fraction of what is needed.

Penney noted that treatment for SPG50 is challenging and expensive to develop — "mainly because it’s a sporadic disease."

The doctor told Fox News Digital, "Pharmaceutical companies often prioritize conditions that affect larger populations, with a more significant potential for recouping research and development costs."

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"The market is much smaller for rare diseases like SPG50, making it financially less viable for companies to invest in creating a treatment."

To devote himself to the cause, Pirovolakis quit his job and started a nonprofit in California, which now has five employees and 20 consultants.

The company — called Elpida Therapeutics, after the Greek word for "hope" — will run a Phase 3 study for SPG50 at the NIH in November.

Without the backing of major drug companies, however, there isn’t funding available to get the therapies to the children who need them. 

Eight doses of the drug for SPG50 were produced in Spain and have been flown to the U.S.

"The treatment is here, just literally sitting in a refrigerator, ready to go," Lockard said. "Doctors are ready. There just isn't enough money to make it happen."

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There are currently four families in the U.S. who are trying to raise the money that's needed, according to Pirovolakis.

"Time is of the essence," he said. "We want to make sure the trial moves on and these kids get treated."

Looking ahead to the Phase 3 clinical trial at the NIH, Pirovolakis’ goal is to treat eight children with SPG50.

"If we can show that it works in all eight children — and we can prove to the FDA that it is making a difference — then the drug will get approved and every child can get it," he said.

Ideally, after the drug is approved — which could take three to five years, Pirovolakis estimates — SPG50 will be added to hospitals’ newborn screening programs and every child with the disease will be able to get the therapy.

Elpida Therapeutics has partnered with the Columbus Children’s Foundation (Fundación Columbus in Spain) and CureSPG50 to help save children with the disease.

"Our partnership with Elpida is driven by an unwavering commitment to leaving no child behind," Sheila Mikhail, co-founder of the CCF, said in a statement to Fox News Digital.

"At the Columbus Children's Foundation and Fundacion Columbus, as a global organization, we believe that every child deserves a chance for a healthy future. Together, we're making groundbreaking strides in treating ultra-rare genetic disorders, ensuring that no child is left to face these challenges alone."

Pirovolakis said he gets several calls each week from families around the world, asking for help saving their children.

"Unfortunately, the biggest challenge in providing treatment for children with rare diseases often comes down to a lack of funding and vision," he told Fox News Digital. 

"The technology to cure our children is already here. I hope that someone with immense wealth — and more importantly, the vision and influence — will step in," he said. 

"Their support could not only impact a handful of diseases and children, but extend hope to thousands of rare diseases and millions of children, both this generation and the next."

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Currently, 40 million Americans are living with a rare disease, and one in 10 will be afflicted by a potentially treatable rare condition.

Pirovolakis added, "Someone you know or love will likely be affected by a rare disease."

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Women’s heart disease risk could be predicted up to 30 years in advance with one blood test, study finds

Predicting a woman’s future heart disease risk could be as simple as administering a single blood test to screen for three risk factors.

That’s according to research published in The New England Journal of Medicine on Saturday — research that was also presented at the European Society of Cardiology (ESC) Congress this weekend.

The study, which included nearly 30,000 women averaging 55 years of age, measured two types of fat in the bloodstream along with a certain type of protein with a blood test in 1993, then monitored the participants’ health for a 30-year period, the researchers said.

WHEN MEASURING HEART ATTACK RISK, ONE IMPORTANT RED FLAG IS OFTEN OVERLOOKED, DOCTORS SAY

"The strongest predictor of risk was a simple blood measure of inflammation known as high sensitivity C-reactive protein, or hsCRP, followed by cholesterol and lipoprotein(a)," lead study author Dr. Paul Ridker, director of the Center for Cardiovascular Disease Prevention at Brigham and Women's Hospital in Boston, told Fox News Digital.

"Knowing all three predicted risks not just at five or 10 years, but at 20 and 30 years, gives us a road map for how to target specific therapies for the individual patient, rather than an overly simple ‘one-size-fits-all’ approach," he said.

C-reactive protein (CRP) is a protein made by the liver that rises when inflammation occurs in the body, according to Mayo Clinic. 

High levels of the protein indicate an elevated risk of heart disease.

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LDL cholesterol — also known as the "bad" cholesterol — can build up in the arteries and raise the chances of heart attack or stroke, Mayo Clinic noted.

Lipoprotein(a), or Lp(a), is a type of LDL cholesterol that can also cause plaque buildup in the arteries.

Women with the highest levels of LDL cholesterol were found to have a 36% increased associated risk for heart disease compared to those with the lowest levels, the researchers found. 

Those with the highest levels of Lp(a) had a 33% greater risk.

The highest levels of CRP put women at a 70% increased associated risk.

Women who had high levels of all three measures were 1½ times more likely to experience a stroke and more than three times as likely to have coronary heart disease, the researchers found.

While most doctors measure cholesterol, very few measure hsCRP and Lp(a), Ridker noted. 

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"It is a truism of medicine that doctors will not treat what they do not measure."

The fact that a single combination blood test predicted risk 30 years later is "astonishing," the researcher said.

"It tells us how much silent risk we simply are unaware of, and gives us an opportunity to start preventive efforts far earlier in life," he added.

Dr. Marc Siegel, senior medical analyst for Fox News and clinical professor of medicine at NYU Langone Medical Center, was not involved in the study, but said it is a "big step forward" in using a combination of blood tests to determine a woman’s cardiac risk.

"This is a large, convincing study that puts together three predictive blood tests that haven't been looked at in this way before," Siegel told Fox News Digital.

"Since inflammation can cause heart attacks, it is confirmatory that an elevated inflammation marker (CRP) conveys a 70% increased risk for heart disease," he went on.

"LDL and Lp(a) have both previously shown an increased risk of heart disease."

Siegel predicts that in the future, blood markers like these will be used in combination with artificial intelligence to determine the risk of heart disease and stroke.

Based on these findings, Ridker recommends that patients ask their physicians to specifically measure hsCRP and Lp(a).

"The time has come for our guidelines to change."

In Ridker’s experience, women tend to be less concerned about heart disease than men.

"Unfortunately, our traditional screening guidelines rarely identify at-risk women until they are in their late 60s or 70s," he said. 

"Yet prevention must start in our 30s and 40s for it to be most effective."

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While prevention efforts should initially focus on a heart-healthy diet, regular exercise, smoking cessation and stress management, some patients will benefit from drug therapies to reduce inflammation and lower cholesterol levels, according to Ridker.

The main limitation of the study is that the women who participated were health professionals, the researchers acknowledged.

"Yet in other settings, we know this is also true for men — and, if anything, an even greater concern for minority individuals," Ridker said.

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The research was funded by the National Institutes of Health (NIH), the National Heart, Lung, and Blood Institute (NHLBI), and the National Cancer Institute (NCI).

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