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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:

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"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!

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Published

August 7, 2017

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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!

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Published

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.