CARLSBAD, Calif.--(BUSINESS WIRE)--Feb 25, 2025--
Today, the Association for Creatine Deficiencies ’ (ACD) Vice-Board Chair and “Beast Games” winner Jeffrey Randall Allen kicked off a 365-mile “Ruck 4 Rare” challenge, an effort to walk across the state of California, to raise awareness for his son Lucas’ disorder, Creatine Transporter Deficiency (CTD).
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In the challenge, Allen and fellow “Beast Games” contestant Jeremy Grant will walk from Death Valley to Santa Barbara carrying weight on their backs, with plans to adjust the amount of weight they carry and give live recognition to supporters of the “ Ruck 4 Rare ” campaign. Their journey will be shared via daily videos on Allen’s YouTube channel, Instagram and other media platforms. This event will gamify charitable giving, ultimately supporting ACD’s “ Fueling the Future ” campaign to cure CTD.
CTD is 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.
"Because my son Lucas suffers 365 days per year due to CTD, I decided to take on the challenge of walking 365 miles in his honor,” said Allen. “Just as our family experiences so many moments of beauty found in the bumps on this rare disease road, I look forward to all the good to come out of this grueling journey as I walk on Lucas’ behalf."
Earlier this month, Allen was crowned champion of Prime Video’s “Beast Games,” winning $10 million – “the largest cash prize in TV history” – and shared his plans to support research and raise awareness for his son’s rare disease. “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.
“Our community of families affected by creatine deficiencies is so thankful for this renewed boost of hope and support in our mission to cure this rare disease,” said ACD Executive Director Heidi Wallis. “With Rare Disease Day coming up on Feb. 28, we share hope with the 300 million families around the world affected by rare diseases for a better future and path toward cures.”
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.
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.
Photo credit: Ruck4Rare
