1 hr 10 min
54 | Big funding for Rett research, Duds and Studs of Equipment, and more! pRETTy happy. | Hope and Rett syndrome
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- Parenting
On today's top three, we looked at the headlines to see what was new for Rett syndrome. We found great information on the history of Trofinetide as well as information about the end of the clinic trial. If you haven't heard about Trofinetide yet, it is the first drug that potentially will soon be on the market to treat symptoms of Rett. You can read more about that here. Second, China was sharing the love and sharing information about Rett syndrome on one of their biggest news outlets. That's pretty exciting when you think about all the good it can do to spread awareness. Clink here to read the article. Third is two big donations to Rett syndrome research! One donation went to the Rett Syndrome Research Trust (RSRT) specifically for the development and testing of a product called Emerald. Its a device designed to monitor vitals from a distance. Learn more about Emerald here. The other donation was given to the International Rett Syndrome Foundation for the purpose of furthering the research of Rett in males. This was donated by a family in honor of their son Otis who as Rett syndrome. You can learn more about their story here.
When you have a medically complex child finding the right equipment can be difficult. And when you do find equipment that works, there's no guarantee it will continue to work as your loved one ages or their diagnosis progresses. We haven't been on this journey long but we have learned about some things that help and some that we thought might but in the end weren't the right fit. Today we're talking about 3 pieces of equipment that didn't work out and 3 that we really love.
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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Social Media, Podcast Platforms, & more! - https://hopp.bio/prettyhappyplace
Send us a voice message - https://anchor.fm/prettyhappypod
---
Send in a voice message: https://podcasters.spotify.com/pod/show/prettyhappypod/message
On today's top three, we looked at the headlines to see what was new for Rett syndrome. We found great information on the history of Trofinetide as well as information about the end of the clinic trial. If you haven't heard about Trofinetide yet, it is the first drug that potentially will soon be on the market to treat symptoms of Rett. You can read more about that here. Second, China was sharing the love and sharing information about Rett syndrome on one of their biggest news outlets. That's pretty exciting when you think about all the good it can do to spread awareness. Clink here to read the article. Third is two big donations to Rett syndrome research! One donation went to the Rett Syndrome Research Trust (RSRT) specifically for the development and testing of a product called Emerald. Its a device designed to monitor vitals from a distance. Learn more about Emerald here. The other donation was given to the International Rett Syndrome Foundation for the purpose of furthering the research of Rett in males. This was donated by a family in honor of their son Otis who as Rett syndrome. You can learn more about their story here.
When you have a medically complex child finding the right equipment can be difficult. And when you do find equipment that works, there's no guarantee it will continue to work as your loved one ages or their diagnosis progresses. We haven't been on this journey long but we have learned about some things that help and some that we thought might but in the end weren't the right fit. Today we're talking about 3 pieces of equipment that didn't work out and 3 that we really love.
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!
----------
Social Media, Podcast Platforms, & more! - https://hopp.bio/prettyhappyplace
Send us a voice message - https://anchor.fm/prettyhappypod
---
Send in a voice message: https://podcasters.spotify.com/pod/show/prettyhappypod/message
1 hr 10 min