The story of Jordan’s Guardian Angels began with one family and their beautiful little girl.
Today, our foundation has united hundreds 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.
New York, NY
Joe & Cynthia Lang
Named for the founders’ daughter, Jordan’s Guardian Angels has worked to assist and improve the quality of life of children and families in the Coachella Valley since 2003. Cynthia and Joe Lang, inspired by friends efforts to assist children during the Christmas Holiday Season began “adopting” families and children in the Coachella Valley during the Holiday Season with the assistance of ministers from the Sacred Heart Church in Palm Desert, CA.
The children and their families were invited to lunch at the parish hall and then transported to stores where they were given gift cards from Santa to use to purchase toys and clothing. That first year, 50 children were adopted. Since that first year, the effort has grown each holiday season, and in fact, in 2013 over 300 children were adopted for the holiday season.
Further inspired to expand their efforts to help additional children, Jordan’s Guardian Angels has been created as a non-profit organization with the goal of helping to improve and bring joy to the lives of children and families in the Coachella Valley and beyond.
Jordan’s Guardian Angels is truly a volunteer -driven organization. All of the individuals involved in helping the efforts of Jordan’s Guardian Angels are volunteers, assuring that almost every dollar raised is committed directly to the efforts of helping children and families.
Dr. Shailesh Asaikar
A board-certified pediatric neurologist, Dr. Asaikar is highly skilled in behavioral/developmental disorders and general pediatric neurology.
Dr. Asaikar’s special interests include epilepsy cerebral palsy, movement disorders, neuromuscular disease, as well as the overlaps between neurology, behavior and development in children and young adults. In 2008, he was named “Best Doctor” by the readers of the Sacramento News & Review.
Carl (C.J.) Schneider
C.J. Schneider has been a CPA since 1974.
He is President and Shareholder of Damore, Hamric & Schneider, Inc. in Sacramento. The accounting, tax and audit practice includes Individuals, Partnerships, Corporations and Non-Profit Organizations.
He is a graduate of California State University – Sacramento.
C.J. has served on the Boards of the Heart Association, Altua Village and the Hornet Stinger Foundation. He now serves as Board Member/Treasurer for Jordan's Guardian Angels.
Andreas (Andy) C. Rockas
Andy Rockas is a political law attorney who has practiced law in California for twenty years. In the field of political law, Andy has represented the State of California, as well as a wide range of private clients, including Fortune 50 companies (such as Chevron and AT&T) and the political committees of former Governor Arnold Schwarzenegger. He currently runs his own law practice in Sacramento, representing a wide range of politically engaged businesses and nonprofit organizations.
Andy is a graduate of U.C. Berkeley and the University of the Pacific, McGeorge School of Law.
Other Project: Dear Santa
Sharing holiday blessings and joy with families in the Coachella Valley
who would otherwise not know the joy and happiness of the Christmas Season
Why We Do It
Unemployment rates in some Coachella cities are still above 20% and nearly 50% of Coachella Valley residents live below the poverty rate. Working with ministers from throughout the Coachella Valley, families are chosen for “adoption” during the Holiday Season by Jordan’s Guardian Angels.
How We Do It
The children and families attend a lunch and holiday party attended by Santa during which the children participate in arts and crafts and receive a catered lunch. During the lunch celebration, Santa provides to each child a gift card to use for purchasing Christmas gifts.
Making an Impact
After lunch the children and families are taken to shopping centers where they get to use their gift cards to purchase holiday gifts. The families are also given gift cards for purchase of food and other holiday necessities. It's our way of making the holiday season brighter for those in need.