Research Update: Team Meets in Denver, Reports Progress

The Jordan’s Guardian Angels research team converged in Denver, Colorado last weekend to collectively discuss the progress made in our quest to reverse, treat or cure Jordan’s Syndrome, a recently-identified mutation in the gene PPP2R5D.

The meeting came shortly after the State of California allocated nearly $12 million in this year’s state budget to help fund our research. Jordan’s Guardian Angels is partnering with the UC Davis Institute for Regenerative Cures to facilitate the distribution of the funding. The Institute is also providing important support in multiple research functions, joining our international team of scientists and geneticists.

“Researchers are working together in a way that I’ve never seen researchers work together and pull together,” said JGA lead medical investigator Dr. Wendy Chung. “We have the best and the brightest in the world being able to think together, and the energy you can feel coming out of this is just exhilarating.”

Substantial milestones have been reached since the last time the research team met in December in New York City. The first collection of induced pluripotent stem cells (iPSCs), created from blood samples given by children impacted by Jordan’s Syndrome, were produced and distributed by the New York Stem Cell Foundation and Rutgers University.

“The iPSCs are useful to study how the PPP2R5D variants affect cell behavior,” said JGA researcher Dr. Richard Honkanen. “These studies will help us understand what is different in the variant cells versus normal cells. Finding out what is wrong represents the first step in the development of a potential cure.”

Several mouse models have also been created, so researchers can further study the impacts and causes of Jordan’s Syndrome. Our medical team also provided detailed updates regarding newly-produced clinical data, shedding further light on the genetic mutation and its specific variants. More than 60 people have now been diagnosed with Jordan’s Syndrome worldwide, though it’s believed there could be hundreds of thousands of undiagnosed cases.

“The amount of work that’s been done in the first year is pretty amazing,” said Jordan’s Guardian Angels co-founder Joe Lang. “10 years ago, it would’ve taken 10 years to get that first year’s work done. That’s how fast it’s moving.”

In the days and weeks following the Denver workshop, our researchers will develop a plan plotting a broad course of the study over the next three years. Momentum continues to build toward reaching our goal of treating or reversing Jordan’s Syndrome. The genetic mutation is also believed to be linked to – and may bring breakthroughs for – autism, Alzheimer’s and cancer.


July 23, 2018



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



Research Team Meets in Phoenix

In an incredibly important step on our journey, the research team met together in person for the first time! Dr. Wendy Chung, lead medical investigator on the Jordan's Syndrome study, helped assemble what she called a dream team that together could solve the PPP2R5D mystery.

We'd created a introductory letter explaining the purpose of Jordan's Guardian Angels, inviting potential research partners – the best and brightest in their respective fields, in the world – to join our team. We were beyond thrilled that every researcher we asked said yes.In order to officially kick off the research effort, a workshop was planned that brought all the newly-formed research team together. The workshop took place in Phoenix on March 24th and 25th of 2017.

"Many of the researchers indicated that, before that night, they hadn't made a link between the work they do in the lab and how their work directly impacts children and families."

On the 24th, the research team gathered with Jordan's Guardian Angels. Several of us spoke about our hopes for the research and what it may mean for our children. Researchers also watched a presentation with pictures of our children. It had an immediate impact. Many of the researchers indicated that, before that night, they hadn't made a link between the work they do in the lab and how their work directly impacts children and families.

The 25th was a full day of presentations. Each of the researchers made presentations about their work as it pertains to this research – and make no mistake, this is complicated, cutting-edge stuff. We're so fortunate to have them on our team! Click here to view the agenda for the event, including the list of researchers and the topics they covered that day.

The day concluded with a brainstorming session where all the high priority work for the next year was listed and divided between the team members. Researchers were each asked to provide a proposal to Jordan's Guardian Angels, detailing how they'll complete the work they signed up to do, and the budget required for completion over the next year.We came away from the conference more excited, committed and confident than ever!



March 28, 2017


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