From Australia to the UK, Columbia to New Zealand and everywhere in between, families from all over the globe united outside San Francisco to fight for a cure to Jordan’s Syndrome, a rare genetic mutation linked to Autism, Alzheimer’s and even cancer.
44 families came together at the second annual Jordan’s Guardian Angels Family Conference in Burlingame, joining the Jordan’s Guardian Angels research team to learn about the latest breakthrough discoveries in our quest for a cure.
Jordan’s Syndrome, a mutation on the gene PPP2R5D, causes developmental delays, global hypotonia, and in some cases, seizures and autism symptoms.
Researchers from nine universities across the U.S. and the world are joining in an unprecedented partnership to work collaboratively toward finding treatments to reverse or cure Jordan’s Syndrome. They provided promising updates on their progress, met individually with families, and collected blood samples given bravely by our children to be used for further study.
“Our research is always designed to move from bench to the bedside, from the laboratory to the patient. Having so many Jordan’s Syndrome families come together in one place makes the work we do so much more real and significant. We see the very people we’re trying to help, and it truly makes a difference,” said Jan Nolta, director of the UC Davis Stem Cell Program and the university’s Institute for Regenerative Cures in Sacramento. UC Davis is one of the institutions partnering on the research.
More than 80 people across the world have been diagnosed with Jordan’s Syndrome, though it’s believed there could be hundreds of thousands of undiagnosed cases.
The Jordan’s Guardian Angels global community was well-represented in Burlingame, with attendees from: Argentina, Australia, Austria, Canada, Colombia, Denmark, India, Ireland, Israel, New Zealand, Norway, Sweden, the Netherlands, the United Kingdom and multiple states across the United States.
“We now know, without a doubt, that we will never feel alone on this journey again,” Bakhos said. “We will continue to march hand in hand, motivated by our children. Our hard work and determination will make a difference in this world; it just has to!"
A huge thank you to all of our families, many of whom traveled thousands of miles to be in Burlingame. Without you, this journey would not be possible. Thank you to our international dream team of researchers, whose brilliance and dedication is driving this research forward to find answers that may help unlock answers for not only our children, but potentially millions more. Finally, we would be remiss without thanking Tree House Tribes, whose volunteers led multiple children's workshops throughout the conference.