Aicardi-Goutières Syndrome (AGS) Family Conference 2019

This video includes interviews with families whose children have Aicardi-Goutières syndrome (AGS), and highlights from the 2019 AGS Family Conference at Children’s Hospital of Philadelphia (CHOP), where families came together for a day of support, education and fun as they learned about AGS and had the opportunity to connect with other families going through similar experiences.

Transcript

Aicardi-Goutières Syndrome (AGS) Family Conference 2019

Aicardi-Goutières syndrome (AGS) is a rare genetic disorder that affects the brain, spinal cord and immune system.

While there is no known cure for AGS, there are several clinical trials currently underway at Children's Hospital of Philadelphia.

On June 22, 2019, the Leukodystrophy Center hosted its first GS Family Conference to bring families together for a day of education and fun.

Parent 1: I really, really, really want to say thank you to the AGSA. It's really all because of you that we do all of this.

Parent 2: We've been coming to these probably since 2008 and one of the things that's special about these is that, in your own community, there really is very limited access to other people who have kids with this particular disease. So, in your regular life, you're pretty much left on an island by yourself. So these kinds of events are really special because you get to be with kindred spirits.

Parent 3: I'm happy to be here. I'm grateful to be surrounded by families who understand our unique perspective. I'm grateful to the CHOP team for working with me so closely on helping to make this a really dynamic experience.

Parent 4: I think it's really important for the newer generation of AGS or AGS-like kids to have a chance to get together with the veterans and the generation that was ahead of us because we really only had interactions over social media and while they've sort of been in the roller coaster ride ahead of us, they sort of guided us until now. Watching some of these kids who are doing really well on the treatment medicine, getting their words back or having you know, some return of function and things like that and then getting to see them doing an art project, is just amazing.

Parent 5: Well, for me, this has really been a blessing to find this AGS family because we're in North Carolina currently and we've met a few families but having an event like this, brings us closer and we get to meet families from all over and to know that I'm not alone in this and there are other families that are going through a lot of the same things that I'm going through. So we can connect with one another.

Parent 6: It gets lonely sometimes you know, having a medically fragile kid and not feeling like you have anyone to lean on even though people are there.

Parent 7: Life with AGS is - there's many ups; many downs and through those ups and downs you start to question your sanity and talking with the other families here, they experience the same ups and downs.

Parent 8: This one, we have so many great experiences, tons of information that will be very helpful for us facing this you know AGS journey. Well, for Eli I think he is familiar with some of the kids here. He is like so happy today and when he's here I think he feels this is like home.

Parent 2: You know, ironically this is like a very joyful experience because you get to see the kids and it's very hopeful and very joyous but it really is, it gives you hope and joy and it really is a great experience.

Topics Covered: Aicardi-Goutieres Syndrome (AGS), Leukodystrophy

Related Centers and Programs: Leukodystrophy Center, Division of Neurology


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