New York City

Home / New York City
IMG_8218-min

"The Sky is the Limit": JGA Families Come Together for Family Conference

We came, we saw, we danced, we hugged, we shared stories, we moved the research forward. The 2022 JGA Family Conference is in the books and what a weekend it was!
 
65 families came together in person in New York City at the TWA Hotel for a necessary gathering to move our Jordan’s Syndrome research forward toward clinical trials. 70 blood samples were collected, 50 clinical data points were gathered, and 30 EEGs were taken. A huge success!
 
Equally as important, our families were able to spend time together, share their stories, meet with the research team members, and learn as much as possible from each other and from our experts.

IMG_8218-min

Many thanks to the TWA Hotel team for making our stay run smoothly, to Corporate Kids for making sure the kids were safe and had a blast, to Seattle Children’s and Simon’s Searchlight, THANK YOU SO MUCH!! And to Columbia University without whom none of the research aspects of conference would have happened, you are nothing short of incredible.
 
To our families, thank you for coming to New York from across the globe or tuning in on your home computers to take part. And to our unbelievable research team, you mean everything to all of us. Thank you for all that you do every single day, for taking the time away from your families to be with us for this weekend and for going above and beyond. We cannot wait to plan another conference and see all of your faces once again!

IMG_2695-min

Important Links:

  • Family Conference Merchandise: Now is your chance to get your hands on some Family Conference swag :) If you weren’t there in person or would like additional t-shirts etc. CLICK HERE to order. There are several new styles including long sleeve for you to purchase and they ship anywhere in the world! Happy Shopping!! 
     

Published

August 23, 2022

Share

Conferences - 08/23/2022
IMG_3071

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.

IMG_3070
"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.

Published

December 16, 2017

Share

Research - 12/16/2017

Connect With Us

Submit

Contact Info

1121 L St, Suite 100, Sacramento, CA 95814

601.589.0533
info@jordansguardianangels.org

Copyright 2022, Jordan's Guardian Angels 

All Rights Reserved.

General Disclaimer
Medical Legal Disclaimer
Privacy Policy

Form 990

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.