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.

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!

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!! 


August 23, 2022