Afleveringen
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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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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/switchUsree 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 [email protected].
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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Zijn er afleveringen die ontbreken?
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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!
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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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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!
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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!
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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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Well folks, we made it to episode 50! This episode we start off by talking about three things we are grateful for. From the podcast to each other we have a lot to be grateful for. We wanted to share our excitement of reaching episode 50 by giving everyone a discount in our store! We have created a special coupon so that if you spend $50.00+ US on our website, and apply the code FREESWITCH22 at checkout you can get a free switch. Just make sure you put a switch in your basket and then enter the code. We would love to send you one!
Visit our shop today! - https://www.prettyhappy.place/shop
This week to celebrate our 50th episode we share some of our favorite episodes from the last two years. We talk about Episode 4 with Jenny and AJ Tesler and how talk about how much we've grown since listening and chatting with the Teslers. We talk tech from Episode 6 with Tracey Hoyng and how we are using that at home as well as setting boundaries for how we can realistically advocate. In Episode 24 we discuss chatting with Colleen English and how much her words spoke to us and have influenced our future choices. Anna Dance-Heimburger also gave us some fabulous advice in Episode 43 about setting goals and habits using the ceiling and floor method. If you have not had a chance to listen to these or any others episodes, please make some time because they may very well change your life.
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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For our top three this week we talk about some incredible updates that have come to Rett research as well as our recap of Rett Syndrome Awareness month. If you would like to look at the articles for this week's top three you can find them here:
Taysha Gene Therapies receives a $50 million investment from Astellas
Report from the Externally-Led Patient-Focused Drug Development Meeting
On this week’s episode we sat down with Kevin Pierce the Chief Operating Officer for Girl Power 2 Cure. Kevin shares with us how he got started with the organization and how the organization itself has grown since it’s inception. As a grandparent of an individual with Rett he brings understanding and personal passion to his position. We learned not only about Girl Power 2 Cure but also about their connection to Rett University and how the organizations support one another.
If you would like to learn more about Girl Power 2 Cure you can find them on their website, www.gp2c.org or on Facebook and Instagram.
If you would like to learn more about the services offered by Rett University you can find them at their website, www.rettuniversity.org or on Facebook and Instagram.
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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We are taking a little break this week after a crazy long Rett Syndrome Awareness Month. We will talk with you next week!
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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The theme for our top three this week is Rett Syndrome in the news. We start with an 8 year old who had the opportunity to be signed on the Alabama State University's Lady Hornet Softball Team. Our second news is about a special awareness art piece that you can be part of and that created by an artist who has Rett syndrome. And finally we share about a family in the UK who found their child's diagnosis through the 100,000 Genomes Project. All link to articlescan be found below.
8 year old Alabama State University Lady Hornet
Confetti: Eye Gaze Designed by Emily Shifflet
Diagnosis through the 100,000 Genomes Project
This week we chat with Karely Boczek. Karely comes to us from Australia to chat about her daughter Charlotte who has atypical Rett Syndrome. Charlotte is an incredible 7 year old who loves school, swimming and music. Karely shares what it is like for her family to have a loved one with atypical Rett, which can sometimes make it harder to relate to other families with Rett. If you would like to get in contact with Karely you can find her on Instagram at The Voice of Our Charlotte.
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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October is Rett Syndrome Awareness Month, and in this week's episode, we chat about three of our favorite posts about Rett shared by others during the first week of October. In addition, there's an informational Tik Tok by Rozita Tyler, an insightful blog post by Colleen English, and a creative display for awareness from Brazil. You can also find more of our favorite posts about Rett Syndrome from this month on the blog on our website.
With the release of this episode, we have come to the end of our interview with Gerna. We are so grateful for all the time she took to talk with us and teach us how to be better communicators and advocates. If you would like to contact Gerna, you can connect with her at [email protected], or you can find her on Youtube, Facebook, Instagram, and Tik Tok.
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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On this week's episode we talk about Acadia's announcement that Trofinetide, the first ever potential drug for Rett treatment, was accepted for filing and review by the FDA. We breakdown the three things that you need to know from that press release. You can find that announcement here.
We continue our conversation with speech language pathologist, Gerna Scholte about communication and inclusion. Gerna share with us ways to be better communicators and well as how to help those around us communicate with our loved ones. If you'd like to get in contact with Gerna you can email her at [email protected] or you can find her on Youtube, Facebook, Instagram and Tik Tok.
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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On this week's top three we share about preparing for Rett Syndrome Awareness Month and the new resource that will be available on September 18th on our website. It will make sharing about Rett on social media a breeze. We also talk about the fact that we now have a new website! There are some great resources currently such as adapted toys and links to the podcast and we will be adding more as time goes. Lastly we chat about some new reasearch related to the causes of Rett symptoms. The link for that article is attached below.
Our main guest this week is the incredible Gerna Scholte. (pronounced Hair-na). Gerna is from the Netherlands but we actually met her at the Ascend 2022 Rett Syndrome National Summit. Gerna specializes in AAC and is extremely passionate about helping individuals be able to communicate and express themselves. If you'd like to get in contact with Gerna you can email her at [email protected] or you can find her on Youtube, Facebook, Instagram and Tik Tok.
High miR-101a Levels May Underlie Processes Leading to Rett Symptoms - https://rettsyndromenews.com/news/elevated-mir-101a-underlie-processes-leading-symptoms-mice/
Mille's Secret World - A life with Rett syndrome - https://www.youtube.com/watch?v=M-_jvs3YMoM
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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The world of Rett is constantly changing and evolving. On this week's episode we share a couple of those research studies to help get you up to date on what's happening with Rett. If you would loke to learn more about any of the studies we referenced, we've attached the links below.
Also on this week's episode we share about our van and Zoey's adaptive seat. It wasn't an easy decision to make and one that we had been putting off for a while, but we finally did it. We've now had our car almost a year and we want to share with you the pros, cons, and quirks about our Chrysler Pacifica and the Turny Evo Seat we had installed for Zoey. It makes her life and our a little easier.
Older Age, Muscle Stiffness Tied to Worse Scoliosis in Rett Syndrome - https://rettsyndromenews.com/news/older-age-muscle-stiffness-tied-worse-scoliosis-rett-syndrome/
Clinical and genetic correlations of scoliosis in Rett syndrome - https://link.springer.com/article/10.1007/s00586-022-07217-8
Intensive Anti-Scoliosis Postural Intervention for Individuals With Rett Syndrome Supported by a Smartphone Application - https://clinicaltrials.gov/ct2/show/NCT05488938
Muscarinic Receptor Modulator Shows Promise in Rett Mouse Model - https://rettsyndromenews.com/news/muscarinic-receptor-modulator-shows-promise-rett-mouse-model/
Clinical and Preclinical Evidence for M1 Muscarinic Acetylcholine Receptor Potentiation as a Therapeutic Approach for Rett Syndrome - https://link.springer.com/article/10.1007/s13311-022-01254-3
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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School is just around the corner and we want to make sure you and your loved ones are prepared for whatever it may through at you. Our top Three this week focuses on some tips/tricks to make the school transition move smoothly.
As parents of a child with a disability we all know the importance and the struggle of getting the much needed self-care. Well on today's episode we are joined by Anna Dance-Heimburger, mother to Lucy who is 13 and has Rett Syndrome and Anna has some great tips for finding and making time for your personal self-care. Tune in to learn about ceiling and floor goals as well as some fun other tidbits.
To watch the sheep dog clip on YouTube click 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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We start off by talking about the different ways to store your medical information. There are a lot of options out there and we discuss some of the ways people are keeping all the important data organized. From binders to cloud storage and apps to banker boxes, we talk pros and cons.
This episode we continue our interview with David and Melissa about inclusion and how they are working to change local playgrounds to be not just "accessible" but inclusive. If you would like to support their efforts you can follow along on Facebook and Instagram @TeamLolo2021
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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July is Disability Awareness Month in the United States and on this episode of the podcast we talk about different things you can do in your community and in your own home to participate. Finding ways to learn, share and grow bring us together as a community.
Speaking of bringing community together, our guest David and Melissa and working on just that! They are working with others in their community to bring change to their local parks. Most parks are not actually accessible even when they are labeled accessible. Everyone should have the opportunity to play together at the playground and this amazing family is working to make sure their daughter and others are not left out. We had so much to chat about with the Benay's that we had to break this interview into two parts. Make sure to come back in two weeks to hear the rest.
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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First up on the episode, we talk about three things you can do to start or improve the communication in your home with your Rett loved one. From knowing what your individual's yes and no are to involving others in the conversation, communication is SO important.
This week we also continue our conversation with Tanya Keller a speech language pathologist and advocate that everyone can communicate. Tanya has been working with individuals with Rett for some time now and has lots of insights and a wonderful perspective when it comes working on their communication. If you would like to get in contact with Tanya, you can find her on her website: everyonecancommunicate.com
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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Sam and Sarah have two kids in school with individualized education plans or IEPs. IEPs are are basically a contract that the school will provide specific accommodations, tools, equipment to help your child to access their education. With the school year coming to a close they have had several IEP meetings to update IEPs for the upcoming school year. To start the show today they share their top three tips for having a successful IEP meeting.
Sam and Sarah's guest on the show today is Tanya Keller. Tanya is a speech language pathologist and strong advocate for individuals with Rett syndrome and other complex medical needs. Sam and Sarah chat with Tanya about her journey of working with individuals with Rett as well as advocacy, and supporting families. We were all so chatty that we split this interview in two. If you would like to get in contact with Tanya, you can find her on her website: everyonecancommunicate.com
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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