CARLSBAD, Calif.--(BUSINESS WIRE)--Feb 14, 2025--
This week, the Association for Creatine Deficiencies ’ (ACD) Vice-Board Chair Jeffrey Randall Allen was crowned champion of Prime Video’s “Beast Games,” winning “the largest cash prize in TV history” to support research and raise awareness for his son’s rare disease.
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Allen’s son Lucas has Creatine Transporter Deficiency (CTD), a rare genetic disorder that limits the brain’s ability to access creatine—an essential compound for energy and development. This condition impacts speech, cognitive abilities, and motor function. Currently, there is no approved treatment for the disease.
"We would love nothing more than to help all the kids diagnosed, thousands not yet diagnosed, and those yet to be born with CTD," said Allen. "I know we can make a difference. We have so many researchers across the world doing amazing work, but as an ultra-rare disease it doesn’t get the attention it deserves. If we could fund more research, we will find a cure for this."
“Beast Games” is a TV competition created by viral YouTuber Jimmy “ MrBeast ” Donaldson that began with 1,000 competitors vying to win the grand prize. Allen competed as contestant #831, enduring intense physical, mental and social challenges to compete for the number one spot.
Allen’s son Lucas is a joyful, loving, and resilient seven-year-old boy who faces daily challenges due to CTD. Until a treatment or cure is found to get creatine into his brain, Lucas will continue to need countless hours of therapy to learn to do things like talk, dress himself and perform basic self-care skills. With no effective treatment available for patients like Lucas, research is crucial to finding therapies that could change Lucas’ life and the lives of the hundreds of others living with CTD, and likely thousands more who have yet to be diagnosed.
"For years, our dedicated rare disease community has fueled groundbreaking research through relentless grassroots fundraising,” said Heidi Wallis, executive director of ACD. “Now, we stand at a crucial juncture, poised to transition from the lab to the clinic. This move demands substantial new investment, which is why we've initiated an ambitious campaign to raise $30 million to propel our most promising treatments into clinical trials. With broader community support, we are determined to find a cure for CTD."
The exact prevalence of creatine deficiencies is unknown. One study found that 2.6% of individuals with a neurodevelopmental disorder of unknown causes actually had CTD, while ACD has estimated that more than 35,000 people worldwide have the disease. ACD’s support community includes approximately 400 individuals around the globe, which highlights the need for greater awareness and diagnosis.
ACD is committed to funding cutting-edge research, from supporting early-career scientists through fellowships to investing in high-impact translational projects including gene therapy and drug repurposing, with multiple ongoing projects showing promising results. The organization’s annual scientific and family conferences create a collaborative space where researchers and families connect, fostering innovation and commitment in the creatine deficiency field.
With support from funders including the Chan Zuckerberg Initiative, the Ludwick Family Foundation and others, ACD has built a robust research network, secured critical patient data and biosamples, and fostered an engaged patient community through expert-led panels, scientific conferences, and collaborative research initiatives. ACD’s advocacy efforts led to the federal adoption of GAMT newborn screening, and the organization is now pursuing the same path for CTD.
To learn more about Allen’s family and his mission to find a cure for Lucas and the hundreds of children around the world affected by CTD, visit creatineinfo.org/lucas.
About ACD
Founded in 2012, the Association for Creatine Deficiencies (ACD) is an international parent-led 501c3 nonprofit organization leading and funding research to cure creatine deficiencies. ACD’s mission is to fund and drive creatine deficiency research efforts, provide patient and family support through education and resources, and to advocate for diagnosis through newborn screening. The vision of ACD is that one day all patients with a creatine deficiency will be diagnosed at birth and given an effective treatment, eliminating the current diagnostic odyssey and the devastating symptoms experienced by patients.
For more information, visit creatineinfo.org.
Jeffrey Randall Allen, winner of competition TV show "Beast Games," stands atop his $10 million grand prize. (Photo: Business Wire)
Jeffrey Randall Allen, winner of competition TV show "Beast Games," poses for a photo. Allen competed on the show to raise awareness about his son Lucas' rare genetic disorder, Creatine Transporter Deficiency (CTD). (Photo: Business Wire)
HAVANA (AP) — Trumpets and drums played solemnly at Havana's airport Thursday as white-gloved Cuban soldiers marched out of a plane carrying urns with remains of the 32 Cuban officers killed during a stunning U.S. attack on Venezuela.
Nearby, thousands of Cubans lined one of Havana’s most iconic streets to await the bodies as the island remained under threat by the administration of U.S. President Donald Trump.
The soldiers' shoes clacked as they marched stiff-legged into the headquarters of the Ministry of the Armed Forces and placed the urns on a long table next to the pictures of those killed. Tens of thousands of people paid their respects, saluting the urns or holding their hand over their heart, many of them drenched from standing outside in a heavy downpour.
Thursday’s mass funeral was only one of a handful that the Cuban government has organized over the past half-century.
The soldiers were part of the security detail of Venezuelan President Nicolás Maduro during the Jan. 3 raid on his residence to seize the former leader and bring him to the U.S. to face drug trafficking charges.
State television also showed images of more than a dozen people it said were wounded combatants from the raid, accompanied by Cuban Foreign Minister Bruno Rodríguez after arriving Wednesday night from Venezuela. Some were in wheelchairs.
Tensions between Cuba and the U.S. have spiked, with Trump recently demanding that the Caribbean country make a deal with him before it is “too late.” He did not explain what kind of deal.
Trump also has said that Cuba will no longer live off Venezuela's money and oil. Experts warn that the abrupt end of oil shipments could be catastrophic for Cuba, which is already struggling with serious blackouts and a crumbling power grid.
Officials unfurled a massive flag at Havana's airport as President Miguel Díaz-Canel, clad in military garb, stood silent next to former President Raúl Castro, with what appeared to be the relatives of those killed looking on nearby.
Cuban Interior Minister Lázaro Alberto Álvarez Casas called the slain soldiers “heroes” of an anti-imperialist struggle spanning both Cuba and Venezuela. In an apparent reference to the U.S., he said the “enemy” speaks of “high-precision operations, of troops, of elites, of supremacy.
“We, on the other hand, speak of faces, of families who have lost a father, a son, a husband, a brother,” Álvarez said.
The events demonstrate that “imperialism may possess more sophisticated weapons; it may have immense material wealth; it may buy the minds of the wavering; but there is one thing it will never be able to buy: the dignity of the Cuban people,” he said.
Carmen Gómez, a 58-year-old industrial designer, was among the thousands of Cubans who lined a street where motorcycles and military vehicles thundered by with the remains of those killed.
“They are people willing to defend their principles and values, and we must pay tribute to them,” Gómez said, adding that she hopes no one invades her country. “It’s because of the sense of patriotism that Cubans have, and that will always unite us.”
The 32 military personnel ranged in age from 26 to 60 and were part of protection agreements between the two countries.
Officials in Cuba have said they expect a massive demonstration Friday across from the U.S. Embassy to protest the deaths.
“People are upset and hurt ... many do believe that the dead are martyrs” of a historic struggle against the United States, analyst and former diplomat Carlos Alzugaray told The Associated Press.
In October 1976, then-President Fidel Castro led a massive demonstration to bid farewell to the 73 people killed in the bombing of a civilian flight financed by anti-revolutionary leaders in the U.S. Most of the victims were Cuban athletes.
In December 1989, officials organized a ceremony to honor the more than 2,000 Cuban combatants who died in Angola during Cuba’s participation in a war that defeated the South African army.
In October 1997, memorial services were held following the arrival of the remains of guerrilla commander Ernesto “Che” Guevara and six of his comrades, who died in 1967.
The latest mass burial is critical to honor those slain, said José Luis Piñeiro, a 60-year-old doctor who lived for four years in Venezuela.
“I don’t think Trump is crazy enough to come and enter a country like this, ours, and if he does, he’s going to have to take an aspirin or some painkiller to avoid the headache he’s going to get,” Piñeiro said. “These were 32 heroes who fought him. Can you imagine an entire nation? He’s going to lose.”
The remains arrived a day after the U.S. announced $3 million in additional aid to help the island recover from the catastrophic Hurricane Melissa. The first flight took off on Wednesday, and a second flight was scheduled for Friday. A commercial vessel also will deliver food and other supplies.
Cuba had said on Wednesday that any contributions will be channeled through the government.
But U.S. State Department foreign assistance official Jeremy Lewin said Thursday that the U.S. was working with Cuba’s Catholic Church to distribute aid, as part of Washington's efforts to give assistance directly to the Cuban people.
“There’s nothing political about cans of tuna and rice and beans and pasta,” he said Thursday, warning that the Cuban government should not intervene or divert supplies. “We will be watching, and we will hold them accountable.”
Lewin said the Cuban government has a choice to: “Step down or better provide towards people.” Lewin added that “if there was no regime,” the U.S. would provide “billions and billions of dollars” in assistance, as well as investment and development: “That’s what lies on the other side of the regime for the Cuban people.”
Cuban Foreign Minister Bruno Rodríguez said the U.S. government was “exploiting what appears to be a humanitarian gesture for opportunistic and politically manipulative purposes.”
Coto contributed from San Juan, Puerto Rico.
Follow AP’s coverage of Latin America and the Caribbean at https://apnews.com/hub/latin-america
People line up outside the Ministry of the Revolutionary Armed Forces where the remains are on display of the Cuban officers who were killed during the U.S. operation in Venezuela that captured President Nicolas Maduro, as it sprinkles rain in Havana, Cuba, Thursday, Jan. 15, 2026. (AP Photo/Ramon Espinosa)
Military members line up outside the Ministry of the Revolutionary Armed Forces where the urns containing the remains of Cuban officers, killed during the U.S. operation in Venezuela that captured President Nicolas Maduro, are on display in Havana, Cuba, Thursday, Jan. 15, 2026. (AP Photo/Ramon Espinosa)
Military members pay their last respects to Cuban officers who were killed during the U.S. operation in Venezuela that captured Venezuelan President Nicolas Maduro, at the Ministry of the Revolutionary Armed Forces where the urns containing the remains are displayed during a ceremony in Havana, Cuba, Thursday, Jan. 15, 2026. (AP Photo/Ramon Espinosa)
A motorcade transports urns containing the remains of Cuban officers, who were killed during the U.S. operation in Venezuela that captured Venezuelan President Nicolas Maduro, through Havana, Cuba, Thursday, Jan. 15, 2026. (AP Photo/Ramon Espinosa)
Soldiers carry urns containing the remains of Cuban officers, who were killed during the U.S. operation in Venezuela that captured Venezuelan President Nicolas Maduro, at the Ministry of the Revolutionary Armed Forces in Havana, Cuba, Thursday, Jan. 15, 2026. (Adalberto Roque /Pool Photo via AP)
A motorcade transports urns containing the remains of Cuban officers, who were killed during the U.S. operation in Venezuela that captured Venezuelan President Nicolas Maduro, through Havana, Cuba, Thursday, Jan. 15, 2026. (AP Photo/Ramon Espinosa)
A motorcade transports urns containing the remains of Cuban officers, who were killed during the U.S. operation in Venezuela that captured Venezuelan President Nicolas Maduro, through Havana, Cuba, Thursday, Jan. 15, 2026. (AP Photo/Ramon Espinosa)
People line the streets of Havana, Cuba, Thursday, Jan. 15, 2026, to watch the motorcade carrying urns containing the remains of Cuban officers killed during the U.S. operation in Venezuela that captured Venezuelan President Nicolas Maduro. (AP Photo/Ramon Espinosa)
Workers fly the Cuban flag at half-staff at the Anti-Imperialist Tribune near the U.S. Embassy in Havana, Cuba, Monday, Jan. 5, 2026, in memory of Cubans who died two days before in Caracas, Venezuela during the capture of Venezuelan President Nicolas Maduro by U.S. forces. (AP Photo/Ramon Espinosa)
