Across the world, parents share in the universal desire to see their children thrive in health and happiness—a wish that becomes even more urgent when a child faces a medical challenge. When confronted with a diagnosis that threatens a child’s wellbeing, parents are driven by an innate determination to seek solutions and find a cure. But, what if there’s no cure to be found? What if this is a one-in-a-million disease doctors and researchers know little about?  

This is exactly the situation that the founders of Jordan’s Guardian Angels, a nonprofit devoted to globally uniting families and seeking a cure for Jordan’s Syndrome—a rare genome variation—found themselves in.  

What started as a 5-day stay in the NICU led to groundbreaking research. November 29, 2005, was one of the happiest days for Joe and Cynthia Lang as they welcomed their daughter, Jordan Margaret Lang, into the world. At around 9 months old, Jordan was experiencing significant developmental delays. Doctors had yet to determine a cause, leaving Joe and Cynthia in the dark about their daughter’s medical wellbeing.  

Nine years passed with no diagnosis in sight until Jordan’s doctors recommended one final test—the mapping of her genome. The results revealed a rare variation on the PPP2R5D gene, later named Jordan’s Syndrome. With little information available, the Langs sought out a renowned medical investigator, Dr. Wendy Chung from Columbia University. Inspired by the family’s story and with a firm belief that something needed to be done, Chung committed to leading the research on reversing this mutation. This research not only aims to unravel the mysteries of this gene mutation but also holds promise for advancements in conditions like intellectual disabilities, autism, Alzheimer’s, and cancer. 

Armed with a team of medical experts, Jordan’s family wanted to learn everything there was to know about Jordan’s syndrome, which unfortunately, was minimal due to the lack of knowledge and rarity of the mutation. Through their research, Jordan’s family found an existing PPP2R5D Facebook group that another family had started. The powerful support and sense of belonging became a lifeline for all the families. Inspired by the immense support through this online community, Joe and Cynthia founded Jordan’s Guardian Angels to unite more families across the world and connect them with resources and support to illuminate a new perspective on Jordan’s Syndrome. Today, families from across the globe have come together to push this research forward, proving the power of uniting behind a common cause.   

Today, there are 425 diagnosed cases of Jordan’s Syndrome, though it is estimated that there are over 250,000 undiagnosed cases. Jordan’s Guardian Angels, established four years ago to assist other children, is now pursuing research aimed at finding a way to reverse the mutation. Researchers and families from all over the world are uniting to study the mechanism of the gene variation to gain a deeper understanding and develop possible treatments for the future.  

This research is only occurring because of two parents’ love for their child and determination to find a cure. Now, parents across the globe are coming together to help fund research that will impact hundreds of thousands of families, fighting for their own one-in-a-million child. Jordan’s Guardian Angels isn’t just a non-profit organization—it stands as a beacon of hope, support, and empowerment for those touched by Jordan’s Syndrome. We are honored to highlight the incredible work they are doing and the community of hope they have created.