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)
DUBAI, United Arab Emirates (AP) — U.S. President Donald Trump said Iran wants to negotiate with Washington after his threat to strike the Islamic Republic over its bloody crackdown on protesters, a move coming as activists said Monday the death toll in the nationwide demonstrations rose to at least 544.
Iran had no immediate reaction to the news, which came after the foreign minister of Oman — long an interlocutor between Washington and Tehran — traveled to Iran this weekend. It also remains unclear just what Iran could promise, particularly as Trump has set strict demands over its nuclear program and its ballistic missile arsenal, which Tehran insists is crucial for its national defense.
Meanwhile Monday, Iran called for pro-government demonstrators to head to the streets in support of the theocracy, a show of force after days of protests directly challenging the rule of 86-year-old Supreme Leader Ayatollah Ali Khamenei. Iranian state television aired chants from the crowd, who shouted “Death to America!” and “Death to Israel!”
Trump and his national security team have been weighing a range of potential responses against Iran including cyberattacks and direct strikes by the U.S. or Israel, according to two people familiar with internal White House discussions who were not authorized to comment publicly and spoke on condition of anonymity.
“The military is looking at it, and we’re looking at some very strong options,” Trump told reporters on Air Force One on Sunday night. Asked about Iran’s threats of retaliation, he said: “If they do that, we will hit them at levels that they’ve never been hit before.”
Trump said that his administration was in talks to set up a meeting with Tehran, but cautioned that he may have to act first as reports of the death toll in Iran mount and the government continues to arrest protesters.
“I think they’re tired of being beat up by the United States,” Trump said. “Iran wants to negotiate.”
He added: “The meeting is being set up, but we may have to act because of what’s happening before the meeting. But a meeting is being set up. Iran called, they want to negotiate.”
Iran through country's parliamentary speaker warned Sunday that the U.S. military and Israel would be “legitimate targets” if America uses force to protect demonstrators.
More than 10,600 people also have been detained over the two weeks of protests, said the U.S.-based Human Rights Activists News Agency, which has been accurate in previous unrest in recent years and gave the death toll. It relies on supporters in Iran crosschecking information. It said 496 of the dead were protesters and 48 were with security forces.
With the internet down in Iran and phone lines cut off, gauging the demonstrations from abroad has grown more difficult. The Associated Press has been unable to independently assess the toll. Iran’s government has not offered overall casualty figures.
Those abroad fear the information blackout is emboldening hard-liners within Iran’s security services to launch a bloody crackdown. Protesters flooded the streets in the country’s capital and its second-largest city on Saturday night into Sunday morning. Online videos purported to show more demonstrations Sunday night into Monday, with a Tehran official acknowledging them in state media.
In Tehran, a witness told the AP that the streets of the capital empty at the sunset call to prayers each night. By the Isha, or nighttime prayer, the streets are deserted.
Part of that stems from the fear of getting caught in the crackdown. Police sent the public a text message that warned: “Given the presence of terrorist groups and armed individuals in some gatherings last night and their plans to cause death, and the firm decision to not tolerate any appeasement and to deal decisively with the rioters, families are strongly advised to take care of their youth and teenagers.”
Another text, which claimed to come from the intelligence arm of the paramilitary Revolutionary Guard, also directly warned people not to take part in demonstrations.
“Dear parents, in view of the enemy’s plan to increase the level of naked violence and the decision to kill people, ... refrain from being on the streets and gathering in places involved in violence, and inform your children about the consequences of cooperating with terrorist mercenaries, which is an example of treason against the country,” the text warned.
The witness spoke to the AP on condition of anonymity due to the ongoing crackdown.
The demonstrations began Dec. 28 over the collapse of the Iranian rial currency, which trades at over 1.4 million to $1, as the country’s economy is squeezed by international sanctions in part levied over its nuclear program. The protests intensified and grew into calls directly challenging Iran’s theocracy.
Nikhinson reported from aboard Air Force One.
In this frame grab from video obtained by the AP outside Iran, a masked demonstrator holds a picture of Iran's Crown Prince Reza Pahlavi during a protest in Tehran, Iran, Friday, January. 9, 2026. (UGC via AP)
In this frame grab from footage circulating on social media from Iran shows protesters taking to the streets despite an intensifying crackdown as the Islamic Republic remains cut off from the rest of the world in Tehran, Iran, Friday, Jan. 9, 2026.(UGC via AP)
In this frame grab from footage circulating on social media from Iran showed protesters once again taking to the streets of Tehran despite an intensifying crackdown as the Islamic Republic remains cut off from the rest of the world in Tehran, Iran, Saturday Jan. 10, 2026. (UGC via AP)
