Research Progress Revealed at NYC Symposium

In a few short months, major progress has already been made in our quest to find a cure for Jordan’s Syndrome!

The international Jordan’s Guardian Angels research team, composed of the best and brightest researchers in their respective fields, converged in New York City in early December. They relayed significant early findings in our study seeking treatments for a recently-discovered variation in the gene PPP2R5D, known as Jordan’s Syndrome.

"We’re just beginning, but what we’re hearing so far is so exciting – and promising."

While much of the information described in the researchers’ presentations to the group was highly technical, it’s clear our team has made initial headway in understanding how the PPP2R5D gene functions, how the variation operates, its impacts, and potentially, how to fix it. We’re just beginning, but what we’re hearing so far is so exciting – and promising. Click here to review the symposium agenda.

There is positive news on another front: Joe Lang, the co-founder of Jordan’s Guardian Angels, reported progress in the fundraising efforts he’s leading. It goes without saying, but we’re so incredibly grateful for the generosity so many are showing to make this study a possibility.

Finally, check out our “Meet the Research Team” page and click on each researcher’s picture to watch new interviews we taped at the NYC symposium. We thought you all might want to hear directly from the researchers about why this study is so promising, and what personally motivates them to discover the cure.


December 16, 2017


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WATCH: “Are You Out There?”

Are you out there?

If your loved one received a PPP2R5D diagnosis, we're here to provide support and hope. Please join our worldwide movement to find answers to Jordan's Syndrome. Watch the video below to learn a little more about who we are and how we can help – then call us, text us, or e-mail us!


December 11, 2017



First Signs of Research Progress

The first tangible signs of progress are here! Five blood samples collected from the Washington, D.C. conference have been successfully reprogrammed as undifferentiated cells, and are on their way to becoming brain cells.

What does that mean, exactly? These brain cells will carry the PPP2R5D variation – Jordan's Syndrome – and will allow the researchers to study the variation and its impact on the brain. This is the very first step in that process. Blood samples were collected from the Washington D.C. conference attendees from each of the children diagnosed with Jordan's Syndrome as well as their parents.

"A subset of the [blood] samples were sent to the New York Stem Cell Foundation (NYSCF) to be transformed into essentially little brains in a dish."

Some of the samples were sent to Rutgers for processing and to be studied as part of the PPP2R5D research. A subset of the samples were sent to the New York Stem Cell Foundation (NYSCF) to be transformed into essentially little brains in a dish.

Some info about stem cells:


The samples received at NYSCF have been successfully reprogrammed and are on their way to be converted to brain cells. We expect full conversion and readiness to distribute to the research team by early next year.

For reference, this would be the first 3 steps shown in the research diagram on the last page of the PPP2R5D study prospectus. This is cutting edge technology that we are fortunate to be taking part in. Science in this field has come a long way in the past 5 years making these steps in the research possible.

Additional skin samples will be collected from families to create additional neurons at UC-Davis.


October 17, 2017



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