pRETTy happy. | Hope and Rett syndrome

Sarah and Sam
  • 4.8 (12)
  • PARENTING

Bringing families and friends together from the Rett syndrome community to discuss life, research, and just have fun. New episodes are released every other Monday morning ... or when life let's us have a break. lol

  1. 08/12/2024

    57 | We're back!!!

    That's right, ladies and gentlemen - we are back at it and excited to begin connecting with others again! ⁠Acadia working to see Rett therapy Daybue approved in Japan, Europe⁠ What great news for individuals with Rett syndrome across the world! We are hopeful that by making this drug more widely available to those that need, improvements will be able to be made for the betterment of all! ⁠Potential cancer drug slows Rett's progression, aids survival in mice⁠ This news is also very exciting. It's always great to hear about progress being made in science to help individuals with Rett. In the end, these types of studies just help us better understand how Rett is. (And yes, I did mean to phrase it like that.) ⁠Give Back & Gear Up T-shirt Fundraiser!⁠ We are excited to be partnering with ⁠Frankie Says Fight Rett⁠ to bring to you this great t-shirt! All funds from this sale will go to Frankie Says Fight Rett, a 501(c)3 non-profit that not only helps bring awareness to Rett syndrome, but also helps those in need with the expenses of traveling to medical appointments, receive adaptive equipment, helps provide respit for parents and caregivers. Support this fundraiser today by ⁠purchasing a t-shirt⁠ before it's too late - pre-orders end September 15, 2024. 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

    1h 25m

  2. 05/15/2023 · BONUS

    A little update on us.

    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! ---------- ⁠⁠⁠Social Media, Podcast Platforms, & more!⁠⁠⁠ - https://hopp.bio/prettyhappyplace

    3 min

  3. 04/17/2023

    56 | Adapting toys is easy, Usree Bhattacharya talks linguistics, and more!

    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

    1h 23m

  4. 04/03/2023

    55 | Trofinetide (aka Daybue) is approved!, Comunication chat w/ Rett University's Susan Norwell, and more!

    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

    1h 19m

  5. 03/06/2023

    54 | Big funding for Rett research, Duds and Studs of Equipment, and more!

    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

    1h 10m

  6. 02/20/2023

    53 | Businesses started because of Rett, What is a Rett clinic w/ Tristen Dinkel, and more!

    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

    1h 9m

  7. 02/06/2023

    52 | Can Neurogene cure Rett?, Dionne Snyders shares struggles of starting a school (Part 2), and more!

    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

    1h 12m

  8. 01/23/2023

    51 | What we've missed these last 2 months, Build a school and they will come w/ Dionne Snyders (Part 1), and more!

    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! ---------- ⁠⁠⁠Social Media, Podcast Platforms, & more!⁠⁠⁠ - https://hopp.bio/prettyhappyplace Send us a voice message - https://anchor.fm/prettyhappypod

    1h 32m
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4.8
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Bringing families and friends together from the Rett syndrome community to discuss life, research, and just have fun. New episodes are released every other Monday morning ... or when life let's us have a break. lol

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