pRETTy happy. | Hope and Rett syndrome Sarah and Sam

We know it's been a minute since we released an episode - but we're still here.


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


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Send in a voice message: https://podcasters.spotify.com/pod/show/prettyhappypod/message

We're excited to have you back for another great episode. On this episode, we talk with Usree Bhattacharya about her family's journey with Rett syndrome. But first, we share with you a little about how the pRETTy happy. shop can save you money on adapted toys.



If you haven't already heard, our website - prettyhappy.place - has a shop on it! Many people have already purchased from the shop and are loving their toys! To check out the shop, just click here - https://www.prettyhappy.place/shop


Adapted Switches (3D printed w/ file) - https://www.prettyhappy.place/product-page/switch



Usree Bhattacharya hails from Georgia, USA. Her daughter, Kalika, was diagnosed with Rett syndrome a few years back. Both Usree and her husband, Jonathan, have a passion for languages; we talk about how having a nonverbal child has helped shape their view of language. It's an amazing conversation and we're grateful to have had the chat. To connect with Usree, send her an email at usreeb@uga.edu.



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://podcasters.spotify.com/pod/show/prettyhappypod


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Send in a voice message: https://podcasters.spotify.com/pod/show/prettyhappypod/message

On this week's podcast, we share three things about Daybue aka Trofinetide that we learned from the community webinar hosted by Acadia Pharmaceuticals. We talked a little more about what improvements and changes were seen during the last 12-week trial. We also talked about the services that Acadia would be offering its consumers through Acadia connect.



On the podcast today we are honored to be interviewing Susan Norwell. Susan is the co-founder of Rett University and a major Rett advocate. She is on a mission to help those who are medically complex have access to literacy and education. Susan tells us a little about herself as well as how she got started with Rett University and the development of Rett U's relationship with Girl Power 2 cure. You can connect with Susan and Rett University on Instagram, Facebook or by email.



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://podcasters.spotify.com/pod/show/prettyhappypod


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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


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Send in a voice message: https://podcasters.spotify.com/pod/show/prettyhappypod/message

On this weeks episode we chat about three businesses that were started because of individuals with Rett syndrome.  The first is Eye Designs by Emily. Emily, who has Rett, shares her talent to create works of art using an eye gaze device. She donates all of her proceeds to Rett syndrome research. You can find her on her website, Instagram and Facebook. The second business that we looked at is Blüm and Bee. They had their soft opening at the end of 2022. Blüm and Bee's online store only employs those with disabilities and even provide a training program to help those individuals succeed. Blüm and Bee was started by Anna Cate's mother. Anna Cate has Rett and when she finished school they knew she would need something fulfilling and worthwhile to fill her time and Blüm and Bee was born.  You can support them by following them on Instagram.  The third business that we talked about is West Coast Door Mats.  Ebony (who has Rett) and her mom Allie create custom designed door mats. They work together to design and paint every door mat by hand. While they are located in Australia, they ship world wide. Find them on Facebook and Instagram.



If you have ever wondered how the Rett Clinic at Children's Hospital Colorado functions, this is the episode for you!  Tristen Dinkel an RN and coordinator extraordinaire for the clinic.  We chat with Tristen about everything from how she got involved with the clinic, to the function of a Rett clinic and how you can prepare for your visit.  You can find more information about the Rett Clinic at Children's Hospital Colorado at their website and you can find more information about other clinics at on IRSF's website.



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


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Send in a voice message: https://podcasters.spotify.com/pod/show/prettyhappypod/message

Wow, these last two weeks have been an absolute whirlwind when it comes to Rett syndrome research. To start with, Neurogene announced on January 23, 2023 that they had received approval from the Food and Drug Administration (FDA) in the United States to begin human clinical trials of their gene therapy drug, NGN-401. This was an absolute shock to the community considering that it's been less than a year since Neurogene announced plans to begin developing a drug.

Neurogene Initial Announcement (May 18, 2022) - https://www.neurogene.com/press-releases/neurogene-announces-new-development-program-in-rett-syndrome-utilizing-novel-exact-technology-platform/

Neurogene EXACT Technology Explained - https://www.neurogene.com/our-technology/

Rett Syndrome Research Trust sits down with Neurogene - https://youtu.be/QuTu_zLcVoI

We also continue our conversation with Dionne Snyders by discussing more specifics of what it's like running a school with such a diverse student population. To learn more about Nova School, visit their website.

https://www.nova-school.co.za/

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


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Send in a voice message: https://podcasters.spotify.com/pod/show/prettyhappypod/message