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



"Spooktacular" Benefit Dinner Raises Thousands for Research

Jordan’s Guardian Angels is extremely grateful to have been the recipient of the 3rd annual St. Catherine’s of Siena Catholic Church Benefit Dinner this past Saturday in Houston.

The Trunk or Treat was a spooktacular time and the turnout was amazing, raising over $7,000!

All proceeds will be directly utilized in our research to find a cure for Jordan's Syndrome. While this is just the beginning, together with your help, we are now closer to achieving our goals and helping children around the world live fulfilling and happy lives.

From the bottom of our hearts, we want to thank @StCatherineHouston for their generosity and support of these families and JGA. A special thank you to our silent auction donors (Finesse Salon & Spa-Memorial, @ElaineTurner, @KendraScott, @karbachbrewing, @OptimalGroup, @TotalWine), Fish Frying Crew, volunteers, family and friends who came out and helped make this wonderful event a huge success!

You have all certainly earned your wings as 3P Angels!

#wearthecrown #totalwine #KendraScott #karbach



November 7, 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



Golden State Classic Raises Funds for Research

They say in life to expect the unexpected, and such was the case with the inaugural Golden State Classic, an all-star swing for charity event benefitting Jordan's Guardian Angels. This particular surprise arrived in the form of a September Sierra snowstorm, blanketing the golf course at the beautiful Edgewood Resort on Lake Tahoe a little earlier than usual.

A little September snow couldn't dampen the giving spirit, however, as sponsors and donors still enjoyed good company while contributing to a great cause.


Inside the Edgewood clubhouse Friday morning, a group of former professional athletes stole the show, setting up an autograph assembly line. The collection of former NFL and MLB players – who were set to take part in the celebrity golf tournament before the snow arrived – signed dozens of baseballs, a thrill for the sports fans in attendance.

Some of our guests left with more than autographed baseballs. A charity raffle wrapped up Friday's festivities, with fine wine and a free luxury hotel stay among the prizes.

On Thursday night, attendees met for a dinner and watched "The Story of Jordan's Syndrome," a documentary highlighting our research effort and the families pushing for answers for their children. Many said it was an eye-opening film that made clear the purpose and importance of the study that could someday impact millions.

The research effort to find answers for Jordan's Syndrome wouldn't be possible without the generosity of our sponsors and funding partners. We'd like to extend a big thank you to all of those who attended, and made the event a big success – in spite of an early taste of winter! Click here to read more about the event. We also wish to thank one of our presenting sponors, Norwood Associates!


September 23, 2017



Families, Researchers Unite in D.C.

We came from as far as Columbia, New Zealand and Europe. Families from around the globe and the Jordan's Syndrome international research team were in one place for the first time, a milestone for all of us.

The first-ever family conference outside Washington, D.C., officially kicked off the study we believe will change the world. More than two dozen families impacted by Jordan's Syndrome were in attendance, and heard presentations from our researchers about the PPP2R5D mystery. Blood samples were also collected from children diagnosed with Jordan's Syndrome.

The conference, sponsored by Jordan's Guardian Angels, had three main goals:

"Families got a chance to ask the questions that have been on their minds and got a better understanding of the genetic variation and its impacts."

Dr. Wendy Chung, lead medical investigator on the study, gave an overview presentation about PPP2R5D, followed by a panel discussion. Families got a chance to ask the questions that have been on their minds and got a better understanding of the genetic variation and its impacts.

Families also had opportunities to have one-on-one time with Dr. Chung and Dr. Ghayda Mirzaa, and had their children evaluated by them.

PPP2R5D Presentation

PPP2R5D Panel Discussion

On Saturday, booths were set up with experts available to provide information about autism, sensory disorders, anat baniel method, and assistive technology. Also on Saturday, Nancy De Orta, one of our parents, gave haricuts to some of the children. For some of them, it was their very first one! 

Renowed advocate and film producer Joey Travolta was a guest speaker and interviewed parents and collected footage for a documentary his company, Inclusion Films, produced about Jordan's Syndrome. The local FOX affiliate in Washington, D.C., came for a follow-up story to their original report featuring a local family.

We capped off the day with a private tour of the U.S. Capitol.

The conference brought us closer together than ever. Though we connect on Facebook every single day, many of us hadn't met before in person. Despite being from different parts of the world, our common bond is strong.

Perhaps more than anything, seeing the children play together and watching the connection they share was a powerful reminder of why our mission is so important.

Blood samples collected from the children are now at the New York Stem Cell Foundation, and are on their way to being converted into brain cells. Every step in this study is worth celebrating. We're on our way!



August 7, 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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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.