California lobbyist Joe Lang has been working tirelessly for the past decade to find a cure for his daughter’s ultra-rare genetic disorder. His daughter, Jordan, was diagnosed with the condition at the age of 10, and now, at 19, a major milestone has been achieved with Japanese drugmaker Shionogi beginning a clinical trial for a treatment for Jordan’s Syndrome, thanks in part to Lang’s efforts.
Lang, a prominent lobbyist in Sacramento, has been instrumental in raising funds and coordinating research efforts for Jordan’s Syndrome. His family foundation, Jordan’s Guardian’s Angels, has been instrumental in the push for a treatment. The state of California allocated $33 million in the 2018 and 2021 budgets for research into the syndrome, highlighting the importance of the issue.
Former Senator Richard Pan helped secure state funding for research into Jordan’s Syndrome, emphasizing the potential for the findings to shed light on other genetic disorders. The research team, which includes doctors from 10 universities and hospitals, has been working on identifying a treatment for the condition, which could have implications for other disorders like autism and Parkinson’s disease.
The upcoming clinical trial will test a drug called zatolmilast, which has shown promise in improving cognitive abilities in mice with Jordan’s Syndrome. Despite the uncertainties, the trial represents a significant step towards finding a treatment and possibly a cure for the rare condition. Lang hopes that one day his daughter will be able to speak, signaling a major breakthrough in her condition.
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