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Flu and RSV Are on the Rise!

Flu and RSV are on the rise. Living with an AGS diagnosis is already really hard. Knowing that exposure to common viruses can trigger or flare disease activity and often lead to temporary or longterm developmental regressions is a major, constant source of added stress for our families around the world. We’ve also been living with the added pressure of trying to stay extra safe in the shadow of a global pandemic. It’s quite a lot to worry about 🚫🦠😵‍💫😷🥴.

You know what makes us feel better about this? Having family, friends, and community members who also get that this is tough and proactively want to try to help keep us safe too

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Introducing the AGSAA Podcast

Another podcast? That's right! We'll be recording and translating regular podcasts (well, vodcasts actually). We've thought hard about how to best share all of the happenings and insights going on in AGS and we've settled on a format that will help us do it less formally. We've been labelled the "AGS Advocacy Leaders", so we want to have more a dialogue with you all. We'll regularly invite families, scientists, therapists, experts, clinicians, etc for short conversations about topics relevant to the AGS community.

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SARS-CoV-2 mRNA-based vaccines in the Aicardi Goutières Syndrome

Participants of the AGS Patient Registry contributed directly to this recent publication in Molecular Genetics and Metabolism finding COVID-19 vaccination to be generally safe in the AGS population. Two big 👏 👏 for everyone in the AGS community that contributed their experiences.

"These findings suggest that COVID vaccination using nucleoside-modified forms of mRNA vaccines are unlikely to directly stimulate ISG expression in response to mRNA internalization in AGS tissues. With continued community spread, we recommend vaccination using nucleoside-modified mRNA vaccines in this rare disease group in individuals for whom vaccines were previously well tolerated." https://doi.org/10.1016/j.ymgme.2022.10.001