What a joy it was to see so many of your faces! On Saturday, March 11th, more than 85 people joined our Virtual Family Conference that brought our community together around the world. There were introductions of our JGA Team with updates on our high-level goals for the year, a message from our Co-Founder Joe Lang and research updates from Dr. Wendy Chung.
 
We also debuted our brand new JGA video! It’s now available in English, French, Spanish, German, Italian and Arabic on our YouTube channel

Here is the English version to get you started: https://www.youtube.com/watch?v=4BgBOYa2Suo.

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Some takeaways and action items for our community:
 
-Please sign up with Simons Searchlight. This is imperative as we move to clinical trials. This information will help move the research forward and the numbers help with the negotiations with pharmaceutical companies. Now is the time, please don’t delay. (If you have any questions, there are step by step instructions on our private family Facebook page.)
 
-Dr. Chung and the Columbia team went over the medical history data from Simons Searchlight and the data collected at the JGA 2022 Family Conference in New York. Collected data from the children who were in attendance match the reported data in Simons Searchlight which indicates the tests utilized were good measures to use going forward.
 
Thank you to all of you who could be there and for those who were not able to be, don’t worry, here is a link so you can get caught up! We are all looking forward to seeing you again soon.
 
Click here for the recording of the conference in case you missed it: https://www.youtube.com/watch?v=z-WScYIewKQ.

Published

March 23, 2023

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