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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.

Published

April 4, 2019

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Hundreds Come Together in Fargo, Raise Money for Research

On a frigid night in Fargo, North Dakota, the giving spirit warmed the hearts of Jordan’s Guardian Angels families across the world. More than $125 thousand was raised for our research at the Diamonds and Denim Gala.

The charity event was hosted by Jessica and Jeff Laliberte, and Savannah and Sydney Glover. Sydney is one of more than 80 children to be diagnosed with Jordan’s Syndrome, a rare genetic mutation on the gene PPP2R5D linked to Autism, Alzheimer’s, and cancer. Jordan’s Syndrome causes significant developmental delays, global hypotonia, and in some cases seizures and autism symptoms.

Multiple families from the Jordan’s Guardian Angels community were in attendance from all over the U.S., including Jon and Stacy Kelley, who gave a heartwarming speech about their quest to find a cure for their daughter Vivian.

Dr. Brian Wadzinski from Vanderbilt University, a member of our international research team of geneticists, medical investigators and scientists, updated attendees about the amazing potential for our research – and the encouraging progress that’s already been made in the first year of the study.

The crowd was entertained by Christian Guardino, a former America’s Got Talent semi-finalist. Christian performed several times and also shared his inspiring story of how experimental gene therapy cured his blindness.

A special thank you goes out to Jessica, Jeff, Savannah, and Sydney – and to everyone who made the Diamonds and Denim Gala such a special evening. The impact will be felt around the world!

Published

March 15, 2019

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1121 L St, Suite 100, Sacramento, CA 95814

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.