Welcome to 2020 ANE Awareness Day

Thanks for joining us on our annual awareness day for Acute Necrotizing Encephalopathy. The last 12 months have been busy at ANE International with many new families joining our community.

This year, with Covid19 isolation and restrictions, newly diagnosed families with loss, and all our families relying on rehabilitation and ongoing therapies; many are on their own with no family, therapists or specialists for support. 2020 to date has been a very difficult year. ANE families have yet to get clear guidance on how Covid19 may affect our genetic families.

Covid19 has also put plans for an inaugral ANE conference in 2021 on hold. This was to coincide with research on the RanBP2 mutation with our genetic families contributing. We look forward to when we can again move forward with these plans.

We are watching the research and trials the medical communities worldwide are conducting in response to the cytokine storm that is affecting Covid19 patients, in some cases causing adult ANE. Some of the medications have already been used for the cytokine storm in ANE patients and we hope that the knowledge of some aspects of ANE will broaden as the knowledge of how to treat Covid19 progresses.

We wish to thank all members of our community for their support, strength, guidance and shared experiences to each other throughout the last 12 months. We know that this is a true lifeline to all members.

We’d like to thank all our supporters from around the world for continuing to spread the word on ANE.

The fast recognition of neurological signs in a viral illness, the crucial early treatment by physicians on the lookout for ANE and the importance of genetic testing is why we have awareness day. This July 31st as you share our posts on social media, please know that you are contributing to this extremely important awareness.

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