The story of Jordan’s Guardian Angels began with one family and their beautiful little girl.
Today, our foundation has united dozens of families across the globe. We’re dedicated to making a better future for all of our children, and potentially millions more, through groundbreaking research that will change the world.
In the Beginning
Jordan Margaret Lang was born into this world on November 29, 2005 at Palm Springs Desert Regional Hospital. After a few hours, doctors started to notice a couple of concerns ranging from a large cranial (head) size to some difficulties with feeding and breathing, resulting in a 5-day stay in Neonatal Intensive Care (NICU).
Around nine months of age, Jordan seemed to be missing some of the normal developmental milestones. Through several different exams and tests, it was determined that Jordan was experiencing significant developmental delays, but the reason was unknown. Her parents would spend years searching for answers.
The Search for Answers
Facing Jordan’s ninth birthday without any medical diagnosis, Jordan’s neurologist determined that the last test to be done (a $22,500 test at the time) was to map Jordan’s entire genome, technically referred to as “whole exome sequencing.” In September 2014, after six vials of blood were drawn and Jordan’s genome was mapped, a new journey began.
The Beginning of a Breakthrough
Doctors discovered Jordan had a rare variation on the gene PPP2R5D, now known as Jordan’s Syndrome. At that time, it had been seen only a handful of times in the world. It was a diagnosis that left her parents with more questions than answers. While the variation’s importance and impacts were unknown, this was enough information to change Jordan’s (and her parents’) world forever.
Armed with this information, Jordan’s mom and dad were left with the question, “Where do we go from here?” Advised by Jordan’s neurologist, Dr. Shailesh Asaikar, and a genetic counselor at GeneDx, Megan Cho, the answer was simple: it was time to find a treatment or even a reversal for this mutation.
Groundbreaking Research Begins
A short eight days later, Jordan’s dad spoke with world-renowned medical investigator Dr. Wendy Chung from Columbia University. What Dr. Chung said was stunning: PPP2R5D research will not only shed light on this gene mutation, but may also help unlock some of the greatest medical mysteries we face today, with potential breakthroughs for intellectual disabilities, autism, Alzheimer’s, and cancer.
Dr. Chung immediately committed to helping to lead the research. Shortly thereafter, a “dream team” of the best and brightest researchers around the US and abroad was assembled, a plan was put together, and research into Jordan’s Syndrome began.
"What Dr. Chung said was stunning: PPP2R5D research will not only shed light on this gene mutation, but may also help unlock some of the greatest medical mysteries we face today, with potential breakthroughs for intellectual disabilities, autism, Alzheimer’s, and cancer."
An International Connection
Jordan’s family searched everywhere online, trying to improve their understanding of the gene itself and the variation. Through this search, they connected with a global community of families similarly devoted to finding answers.
Jordan’s family joined an existing PPP2R5D Facebook group that another family started. The powerful support and sense of belonging became a lifeline for all of the families. It wasn’t long before Jordan’s Guardian Angels spread its wings to include all these beautiful children and committed to drive the research forward until answers are found!
Our Journey: The Next Steps
Since that first day of getting the test results, the world has moved very quickly. The power of families driven by love and unity to help their children is empowering. It’s just the beginning of this journey, but we are determined to take every step until we find answers to solve Jordan’s Syndrome.A detailed prospectus on the research plan, team and budget has been developed and is available.