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VIDEO: JGA Researchers Nearing Breakthrough

In beautiful Lake Tahoe, California, the Jordan's Guardian Angels team came together to hear about the latest breakthroughs in our mission to cure Jordan's Syndrome, a mutation on the gene PPP2R5D.

Watch the video below to learn about the incredible advancements our research team is making, a journey we couldn't make without the incredible generosity of our international community.

To connect with our global community, visit https://www.facebook.com/PPP2R5D/.

Published

November 22, 2019

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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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One Year Later: Progress After the 1st Family Conference

One Year Later

One year has passed since families from around the world came together for the first-ever Jordan's Guardian Angels family conference in Washington, D.C. In a matter of months, incredible progress has been made in our quest to cure Jordan's Syndrome, a recently-identified mutation on the gene PPP2R5D linked to autism, Alzheimer's, intellectual disabilities and cancer.

Here's a look back at the major milestones we've reached since that first family conference held in August 2017.

Closer to a Cure

Our Growing Community

The Jordan's Guardian Angels global family has nearly doubled in size, from 35 to now more than 60 families impacted by Jordan's Syndrome.

Researchers Come Together

Jordan's Syndrome is reversible. That was the major conclusion of our international research team in late 2017.

Our team of researchers, scientists and medical investigators held multiple in-person meetings, discussing early discoveries made during initial research. Our team came together in December 2017 in New York City, and again in July 2018 in Denver.

Worldwide Support

Thanks to the inspiring generosity of communities around the world, we have raised hundreds of thousands of dollars at multiple fundraising events in Houston, Texas; Lake Tahoe, California; Phoenix, Arizona; and Belfast, Northern Ireland, to name a few.

State of California Funding (July 2018)

A Funding Foundation

In a milestone moment, the State of California supported our research with a $12 million allocation in the state budget.

Our Work Isn't Done

The funding will help provide for the first phase of the project, though we must still secure additional resources to take additional steps toward curing Jordan's Syndrome.

First iPSCs Created (April 2018)

The first batch of iPSCs (induced pluripotent stem cells) have been created by the New York Stem Cell Foundation (NYSCF), and distributed to Rutgers University for duplication and distribution.

The iPSCs were created from blood samples given by our children at the first family conference in Washington, D.C., and will play a critical role in understanding Jordan’s Syndrome – and how it may be reversed, treated or cured.

Click here to learn more!

First PPP2R5D Mouse (Jan. 2018)

Our first mouse with a verified PPP2R5D mutation was created in early 2018. Researchers will study mice modeled with the PPP2R5D mutation to better understand how Jordan's Syndrome causes developmental delays, and begin to explore potential ways to treat, reverse or even cure the mutation.

International Attention

Media outlets from around the world have helped spread awareness about Jordan's Syndrome research – and its potential to help unlock some of the world's greatest medical mysteries. Television stations and newspapers in Sacramento, Houston, Denver, Israel, the United Kingdom and beyond have shared the stories of our families, and the amazing possibilities our research holds.

See media coverage here!

Connect With Us

Contact Info

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.