Compelling Message from Families to Researchers

Compelling Message from Families to Researchers

Jeff & Renee Rome SymposiumGreetings from Rome! What a wonderful week it has been here. The weather has been spectacular, but more important the 2nd Symposium on ATP1A3 in disease was a huge success! While much that was shared contained unpublished data, suffice to say that researchers have made (and will continue to make rapid progress in understanding why the mutations cause the symptoms we see in AHC, and potentially how to fix them.

We patient orgs and families helped spur them on with compelling messages of unity and hope from around the globe. Jeff Wuchich Presentation Rome Symposium is the presentation I made of the message from you the families of AHC worldwide, based on a number of emails, conversations, and postings from numerous families from many countries.  I hope to have audio soon (the video did not turn out as I had hoped 🙁 ) .

One video that did turn out well and that the researchers received with much enthusiasm was the thank you video below. Kudos to the families who participated.  If you would like to send your thank you video, please contact me as we will be making more of these to keep the researchers motivated. Also, we would like to feature one AHC “champion” a month on our site and send that story to the researchers as well. Contact me to get your story on our site!

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