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Momentum Building: 2019 Year-in-Review

In 2019, the Jordan’s Guardian Angels global community of families and researchers pushed ahead, making significant strides on our journey to cure Jordan's Syndrome, a mutuation on the gene PPP2R5D.

Our brilliant researchers are working together collaboratively in a way the science world has never seen, helping establish a roadmap for treating not only Jordan's Syndrome, but other rare genetic conditions. Our families around the world are united, dedicated to finding answers for our children. And none of this would be possible without the incredible support we receive from communities across the world.

Our Families

  • Our community grew from 78 families to 120 families this year!
  • We had our second family conference in March in the San Francisco area, where families from all over the world joined together with the entire research team to learn about the latest breakthroughs.
  • Click here for an in-depth look at the potential worldwide impacts, and watch the video below to experience the family conference!

Our Research

  • We held two in-person workshops in Chicago and New York, and bi-monthly virtual labs with the entire research team as they continue their amazing work.
  • Our wonderful research team made significant progress in their efforts to find a treatment and a cure for our children over the last year. In the words of lead medical investigator Dr. Wendy Chung, our toolbox is full.
  • We now have iPSCs derived from our children, mice models for , and nanobodies for each variation.
  • At our recent research team meeting in New York City, we learned the team has made great progress in understanding how the mutation works, which will help focus their search for a cure.
  • Our researchers believe the PPP2R5D mutation may be connected to some of our greatest medical mysteries, including autism, Alzheimer's, and cancer – and potentially much, much more.

Getting the Word Out

  • Our website traffic is increasing at a substantial rate and our videos have been shared and seen by tens of thousands of people all over the world.
  • The San Francisco Giants and Minnesota Twins welcomed JGA to their ballparks, showing us on the big screen with our message visible for more than 50,000 people to see.
  • The San Francisco 49ers also mentioned JGA on their social media accounts, where millions of people were able to gain more awareness about our efforts.

Our Community

  • Many fundraising events have been held around the globe.
  • The North Dakota Gala and the Golf Tournament raised more than $215,000.
  • Our annual Lake Tahoe fundraiser also raised an additional $200,000.
  • In addition, we are SO proud of our families who have also stepped up and raised over $52,000 through in-person and Facebook events. So much to be thankful for!

We have much work to do, but we are well on our way to making our children's – and the world's – future as bright as possible. We owe it to ALL of our children. Here's to another amazing year in 2020!

Follow our journey and connect with our community on social media!

www.facebook.com/PPP2R5D

www.twitter.com/PPP2R5D

Published

January 11, 2020

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One Year Later: Progress After the 1st Family Conference

One Year Later

One year has passed since families from around the world came together for the first-ever Jordan's Guardian Angels family conference in Washington, D.C. In a matter of months, incredible progress has been made in our quest to cure Jordan's Syndrome, a recently-identified mutation on the gene PPP2R5D linked to autism, Alzheimer's, intellectual disabilities and cancer.

Here's a look back at the major milestones we've reached since that first family conference held in August 2017.

Closer to a Cure

Our Growing Community

The Jordan's Guardian Angels global family has nearly doubled in size, from 35 to now more than 60 families impacted by Jordan's Syndrome.

Researchers Come Together

Jordan's Syndrome is reversible. That was the major conclusion of our international research team in late 2017.

Our team of researchers, scientists and medical investigators held multiple in-person meetings, discussing early discoveries made during initial research. Our team came together in December 2017 in New York City, and again in July 2018 in Denver.

Worldwide Support

Thanks to the inspiring generosity of communities around the world, we have raised hundreds of thousands of dollars at multiple fundraising events in Houston, Texas; Lake Tahoe, California; Phoenix, Arizona; and Belfast, Northern Ireland, to name a few.

State of California Funding (July 2018)

A Funding Foundation

In a milestone moment, the State of California supported our research with a $12 million allocation in the state budget.

Our Work Isn't Done

The funding will help provide for the first phase of the project, though we must still secure additional resources to take additional steps toward curing Jordan's Syndrome.

First iPSCs Created (April 2018)

The first batch of iPSCs (induced pluripotent stem cells) have been created by the New York Stem Cell Foundation (NYSCF), and distributed to Rutgers University for duplication and distribution.

The iPSCs were created from blood samples given by our children at the first family conference in Washington, D.C., and will play a critical role in understanding Jordan’s Syndrome – and how it may be reversed, treated or cured.

Click here to learn more!

First PPP2R5D Mouse (Jan. 2018)

Our first mouse with a verified PPP2R5D mutation was created in early 2018. Researchers will study mice modeled with the PPP2R5D mutation to better understand how Jordan's Syndrome causes developmental delays, and begin to explore potential ways to treat, reverse or even cure the mutation.

International Attention

Media outlets from around the world have helped spread awareness about Jordan's Syndrome research – and its potential to help unlock some of the world's greatest medical mysteries. Television stations and newspapers in Sacramento, Houston, Denver, Israel, the United Kingdom and beyond have shared the stories of our families, and the amazing possibilities our research holds.

See media coverage here!

Connect With Us

Contact Info

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.