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“Superheroes on the Move” Event Brings Families Together, Raises Thousands

Teaming up with a pair of superheroes, dozens of families were on the move to raise money for our groundbreaking research into Jordan's Syndrome. The Superheroes on the Move event held last Saturday in the Phoneix area raised more than $4,000!

More than 90 people took part in the walk, which was led by Captain America and Wonder Woman. Three families with children diagnosed with Jordan's Syndrome – Avianna, Ava, and Yara – joined in the festivities.The family-oriented event featured a bounce house, as well as a raffle with donations from the W Scottsdale, Waxing the City Tempe, Kendra Scott Scottsdale, Laser Away Chandler, and a gym membership from Desert Fitness Mesa.

We were also thrilled to be joined by several vendors, including Pawsitive Friendships, a Phoenix-area organization that provides animal-assisted therapy to children with special needs. Thank you to everyone who came together to make this event so special!!

Published

February 28, 2018

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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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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.