California lobbyist Joe Lang has dedicated over a decade of his life to pushing for a cure for his daughter’s ultra-rare genetic disorder. A seasoned veteran in shaping California policy since the 1980s, Joe Lang’s journey took an unexpected turn when his daughter, Jordan, was diagnosed with a neurodevelopmental disorder that bears her name.
Every morning, Joe Lang rises early to embark on what he describes as his second job—coordinating a nationwide medical research program into Jordan’s Syndrome. A condition that affects only a handful of individuals like his daughter, Jordan, this disorder presents a range of symptoms that make self-care a daunting task.
At the age of 10, Jordan received her diagnosis, and now at 19, she continues to navigate life with the support of her dedicated family. Joe Lang, alongside his family’s foundation, Jordan’s Guardian’s Angels, has tirelessly raised funds and assembled a research team to delve into finding a treatment for this rare disorder.
The groundbreaking news arrived this month when Japanese drugmaker Shionogi announced the commencement of a clinical trial for a treatment targeting Jordan’s Syndrome. The company’s chief medical officer, Juan Carlos Gomez, expressed gratitude towards Lang and his foundation for their pivotal role in this historic study.
California’s contribution to this milestone cannot be understated. A total of $33 million allocated in the 2018 and 2021 state budgets facilitated early research into Jordan’s Syndrome. This financial support enabled doctors at various universities and hospitals to collaborate in their efforts, streamlining the path towards a potential treatment.
Former Sen. Richard Pan, a key figure in securing state funding for Jordan’s Syndrome research, highlighted the importance of shedding light on rare genetic disorders due to their implications for broader medical conditions. By unraveling the mysteries of Jordan’s Syndrome, researchers hope to gain insights into related disorders like autism and Parkinson’s disease.
The journey towards finding a treatment for Jordan’s Syndrome has been a rollercoaster for Joe Lang and his family. Initially faced with the challenge of understanding Jordan’s developmental delays, they finally received a diagnosis through genetic mapping. A mutation on a single gene, PPP2R5D, was identified, shedding light on the condition affecting their daughter and a small group of individuals.
Driven by a father’s love and determination, Joe Lang found himself immersed in the world of medical research, advocating for his daughter and others grappling with rare genetic disorders. The research team embarked on a journey of modeling the malfunctioning gene, screening existing drugs, and ultimately identifying a potential treatment in zatolmilast.
As the upcoming clinical trial approaches, individuals with Jordan’s Syndrome will undergo a six-month regimen of zatolmilast to assess its impact on cognitive abilities. Joe Lang’s ultimate hope is to hear his daughter speak, a milestone that could revolutionize Jordan’s quality of life and open doors to countless possibilities.
While the outcome of the trial remains uncertain, the promise of progress and the dedication of individuals like Joe Lang provide a beacon of hope for families grappling with similar challenges. Former Sen. Richard Pan commended Lang’s unwavering leadership and passion, recognizing the profound impact his efforts have on children and families affected by rare genetic disorders.
As the research team continues to explore potential treatments and a cure for Jordan’s Syndrome, the journey remains a testament to the power of perseverance, love, and unwavering dedication. Joe Lang’s story serves as a poignant reminder of the resilience and hope that drive families facing the complexities of rare genetic disorders.
