I had an interview with a journalist for PBS Nova Next in regards to genetics and Brugada Syndrome. Possibly in the future, genetic defects can be fixed? Read here: http://www.pbs.org/wgbh/nova/next/body/crispr-and-stem-cells-could-speed-studies-of-rare-diseases/
Brugada Girl ™
Live Your Life Like There Is No Tomorrow
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Brugada Girl ™ 
Feb 05, 2017 @ 11:11:58
Oh no! I just re-read your “invited” post and see that you declined their invitation.
I totally get that response, especially with your busy family life. But what a huge honour to be invited! Loved your observation “….despite me trying to stay mostly anonymous, they have noticed me. I guess I’m more ‘visible’ than I thought!” You know it! You are THE Brugada Girl, so no wonder they noticed you!!
Feb 05, 2017 @ 12:06:35
It was dumb of me to think I can stay invisible with social media. Woops!
Feb 05, 2017 @ 12:33:08
Oh, not “dumb” at all! I think it was likely a huge shock for you to see how many Brugada patients responded to your blog so enthusiastically. You became the self-educated ‘voice’ of the Brugada patient, even though that wasn’t your original goal!
And it was a darned good thing you did! 🙂
Feb 05, 2017 @ 12:46:31
Thanks for that Carolyn. I didn’t expect it at all.Sometimes I wish I didn’t start it because I’m such a private person and this got bigger than I expected. But I can’t turn back now because I feel the need to help others through it
Feb 05, 2017 @ 11:08:33
Another terrific article in prominent, mainstream media, Alicia!! Amazing what researchers are doing to solve this rare disease mystery…
HEY! When are you off to Italy? Have a wonderful time at your Brugada conference.
hugs
C.
Feb 05, 2017 @ 12:07:59
Thanks Carolyn. I will get to Italy someday but when I do it will be to see the towns my great grandparents came from 😀