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Beast Games winner Jeff Allen seeks a cure for his son's rare disease
Summary
Jeff Allen, who won the show 'Beast Games,' is using his platform and prize money to support research into creatine transporter deficiency (CTD), a rare genetic condition that prevents creatine reaching the brain. He and advocates have funded fellowships and recent projects at Stanford and Johns Hopkins as part of efforts aimed at moving potential treatments toward clinical testing.
Content
Jeff Allen, the winner of the reality show 'Beast Games,' is directing attention and funds toward his son Lucas's diagnosis of creatine transporter deficiency (CTD). CTD is a rare genetic disorder in which a mutation blocks creatine from reaching the brain and muscles, affecting development and causing seizures and developmental delays. Allen joined the Association for Creatine Deficiencies and helped launch programs to fund research, including a "Race for a Cure" initiative and recent grants to academic teams.
Known details:
- Creatine transporter deficiency (CTD) is caused by a genetic change that prevents creatine from entering high-energy cells in the brain and muscle.
- Allen and the parent-led Association for Creatine Deficiencies have funded research fellowships and estimate about $400,000 invested in recent years.
- The group announced funding for two projects, one at Stanford and one at Johns Hopkins, and other teams at Purdue and abroad are pursuing complementary approaches.
- Researchers are studying several experimental strategies, including gene-based approaches and small molecules designed to bypass the faulty transporter; some investigators say success could also inform treatments for other brain conditions.
Summary:
Researchers supported by Allen and the advocacy group are conducting preclinical work and early-stage projects intended to advance toward clinical trials for CTD. Undetermined at this time.
