We have had some time to reflect on our time in Boston and our hearts are SO full!

We had 110 families, our entire research team, 30 therapists and doctors from Boston Children’s Hospital and many more join us for our “Together We Stand” JGA Family Conference. Thank you to those of you who traveled from near and far to be there, there’s nothing better than being all together! We hope you left feeling inspired and hopeful.

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Click here for a link to the Conference Agenda.
 
If you were unable to attend conference, or if you want to watch the presentations again, here are the YouTube links for all of the 2024 JGA Conference Sessions! Translation services are available via YouTube.

We announced at Conference that Human Clinical Trials will be starting soon. Click here to watch Dr. Wendy Chung’s announcement!

Details for clinical trials are below.

Clinical Fact Sheet

Are you interested in participating in clinical trials? Send an email to joanne.carroll@childrens.harvard.edu and you will be added for the list for consideration.
  
You can read up on all of the research to find a treatment or a cure for Jordan’s Syndrome. Click here to read our 2024 update.
 
We also saw how much you all used the conference Facebook chat and we want to remind you that we have other chats for you to join to stay in the loop. In addition to the Community Chat and the Ask the JGA Team Chat, there is also a Mom’s Group and a Dad’s Group too! Join today! 

We want to thank all of you again for your continued participation and excitement! Together we stand and our future is SO bright! If you have any questions, please don’t hesitate to reach out to any of us here on your JGA Team!
 

Published

August 28, 2024

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