"The Sky is the Limit": JGA Families Come Together for Family Conference

We came, we saw, we danced, we hugged, we shared stories, we moved the research forward. The 2022 JGA Family Conference is in the books and what a weekend it was!
65 families came together in person in New York City at the TWA Hotel for a necessary gathering to move our Jordan’s Syndrome research forward toward clinical trials. 70 blood samples were collected, 50 clinical data points were gathered, and 30 EEGs were taken. A huge success!
Equally as important, our families were able to spend time together, share their stories, meet with the research team members, and learn as much as possible from each other and from our experts.

Many thanks to the TWA Hotel team for making our stay run smoothly, to Corporate Kids for making sure the kids were safe and had a blast, to Seattle Children’s and Simon’s Searchlight, THANK YOU SO MUCH!! And to Columbia University without whom none of the research aspects of conference would have happened, you are nothing short of incredible.
To our families, thank you for coming to New York from across the globe or tuning in on your home computers to take part. And to our unbelievable research team, you mean everything to all of us. Thank you for all that you do every single day, for taking the time away from your families to be with us for this weekend and for going above and beyond. We cannot wait to plan another conference and see all of your faces once again!

Important Links:

  • Family Conference Merchandise: Now is your chance to get your hands on some Family Conference swag :) If you weren’t there in person or would like additional t-shirts etc. CLICK HERE to order. There are several new styles including long sleeve for you to purchase and they ship anywhere in the world! Happy Shopping!! 


August 23, 2022



Families, Researchers from Around the Globe Discuss Groundbreaking Research

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.

"Jordan's Guardian Angels brought us all together... these strangers from around the world. We laughed, cried, danced, shared experiences, and built lifelong relationships,” said Carole Bakhos, project manager, whose daughter Yara has been diagnosed with Jordan’s Syndrome.

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.


April 4, 2019


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Jordan’s Guardian Angels is a public charity exempt from Federal Income Tax as an organization described in Section 501 (c)(3) of the Internal Revenue Code, EIN 90-1022228. Contributions to Jordan’s Guardian Angels are tax deductible to the fullest extent allowed by law. No goods or services were provided in consideration for the contributions except as reported above.