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51 | What we've missed these last 2 months, Build a school and they will come w/ Dionne Snyders (Part 1), and more!
Manage episode 353282616 series 2978511
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Welcome back to the podcast everyone! Glad to be back after our end of year break. To start this episode we are going to be talking about Rett in the news. There was a new MECP2 gene mutation found and connected to Rett Syndrome. Is that a good thing? In short, yes! That means that we are learning and research is progressing. If you want to learn more by reading the article you can find it by clicking here. We also share about an app developer that donated to IRSF. While we love that there is more money going to Rett research make sure you do your research when choosing what apps to use. Sam did a deep dive into this one and didn't find much. You can read more about their donation here. For our final top three, we talk about a study that looks at Rett affecting sleep....well duh! It looks at sleep structure abnormalities and you can find more information about that article here. BONUS: We need to correct something that we've said in the past. There have in fact been other gene therapy trials in the US. We're sorry for the confusion. We won't go into all the details but if you'd like to learn more about the history of gene therapy in the US you can find it on this website.
On this week's episode, we welcome Dionne Snyders to the podcast. Dionne is from South Africa and is very active in the Rett community and with Rett SA. Dionne joins us to talk about her daughter who has Rett as well as her response to inadequate schooling for her daughter. Dionne along with another parent and an SLP started a school! Nova School is specifically for learners using AAC. They currently even have some students that do satellite schooling and use zoom to access the classes. Every learner has a communication partner who makes sure all the environmental and personal needs are met so the teachers can focus on what they do best...teaching! If you would like to learn more about Nova School you can visit their website or follow them on Instagram and Facebook.
If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!
Subscribe today so that you never miss an episode. And we'll see you next time!
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