Explore every episode of the podcast pRETTy happy. | Hope and Rett syndrome
| Title | Pub. Date | Duration | |
|---|---|---|---|
| 57 | We're back!!! | 12 Aug 2024 | 01:25:10 | |
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
Potential cancer drug slows Rett's progression, aids survival in mice
Give Back & Gear Up T-shirt Fundraiser!
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 | |||
| A little update on us. | 15 May 2023 | 00:03:28 | |
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 | |||
| We're taking a break... for 1 week... | 07 Nov 2022 | 00:00:52 | |
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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypodRe Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 48 | Girl w/ Rett joins college softball team, Meet Karley Boczek - mum to Charlotte, and more! | 24 Oct 2022 | 01:19:32 | |
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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 47 | A few favorite Rett syndrome awareness posts, Ethical communcation w/ Gerna Scholte (Part 3), and more! | 10 Oct 2022 | 01:08:56 | |
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 be.response.able@gmail.com, 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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 46 | Trofinetide accepted for review, Augmentative and adaptive communication w/Gerna Scholte (Part 2), and more! | 26 Sep 2022 | 01:03:49 | |
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 be.response.able@gmail.com 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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 45 | Preparing for Rett Syndrome Awareness Month, Discussing effective communication w/ Gerna Scholte (Part 1), and more! | 12 Sep 2022 | 01:02:45 | |
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 be.response.able@gmail.com 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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 44 | Updates in the world of Rett, Our car & such, and more! | 29 Aug 2022 | 01:17:45 | |
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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 43 | Back to school, Chatting with Anna Dance-Heimburger about self-care, and more! | 15 Aug 2022 | 01:17:06 | |
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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 42 | Storing all those medical files you've got, cont. w/ Melissa & David Benay (Part 2), and more! | 01 Aug 2022 | 01:02:13 | |
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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 41 | Celebrating Disability Awareness Month, Chatting about playground inclusion w/ the Benay's (Part 1), and more! | 18 Jul 2022 | 00:58:24 | |
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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 40 | Communicating around the home, continuing our conversation with Tanya Keller - SLP (Part 2), and more! | 20 Jun 2022 | 00:59:43 | |
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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 56 | Adapting toys is easy, Usree Bhattacharya talks linguistics, and more! | 17 Apr 2023 | 01:22:57 | |
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
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 | |||
| 39 | IEPs and me (actually, your kid), Meet Tanya Keller - SLP (Part 1), and more! | 06 Jun 2022 | 01:11:44 | |
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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 38 | Rett syndrome news, A travel-log of our trip to ASCEND Rett 2022, and more! | 23 May 2022 | 01:33:07 | |
To start the episode Sam and Sarah chat about Zoey participating in research studies and how they support Zoey's decision on participating. Going along with research studies, they share about Neurogene, a company based out of New York that announced they are developing a gene therapy for Rett Syndrome. Sam also shares a very relatable article about life as a Rett family called "My Pet Peeves as a Mother of a Teenager with Special Needs". Sam and Sarah share a travel log about their trip to Nashville Tennessee. They talk about their thoughts on the ASCEND 2022 National Rett Syndrome Summit as well as share the results from the unofficial survey they posted. There were a lot of very similar thoughts when it came to the Summit both good and not as good. Listen to hear what people thought. To learn more about Neurogene and their gene therapy announcement 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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 37 | Top Three from Tennessee, Meet Amelie White - mum to Poppy, and more! | 09 May 2022 | 01:09:04 | |
We begin this episode by sharing our top three highlights from our trip to Nashville, Tennessee. If you attended ASCEND 2022 and would like to participate in our survey, you can find the link on our website. This week we welcome Amelie White from the United Kingdom. Amelie joins us to talk about her experience with navigating Rett Syndrome with her now 6-year-old daughter, Poppy. She talks about the heartache of the diagnosis; the joy she finds in Poppy and the ways that she has found to share and bring awareness to Rett Syndrome. Amelie and her daughter Poppy's journey on Instagram at @popsylou.et.nous or on Facebook at Nobody Puts Poppy in the Corner To learn more about Rett Syndrome resources in the UK visit www.rettuk.org 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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 36 | Upcoming events Sarah is excited about, Resources for those in the United States w/ Megan Case, and more! | 25 Apr 2022 | 01:10:01 | |
On this week's episode we're shaking things up with Sarah and a guest host. First, Sarah shares about a couple upcoming events in the Rett and Disability community that she's excited for. Then, Megan Case, a returning guest to the podcast, joins Sarah to break down federal and state resources and where to find them in their and your areas. All the links they have to share are below: Federal Resources:
Idaho Resources:
Colorado Resources:
To follow along with Megan Case and her family, you can follow her on Facebook at Emma's Village. 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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 35 | Rett syndrome research has some big movement, Meet Ashley & Matt Dahms - parents to Bennett, and more! | 11 Apr 2022 | 01:06:34 | |
The month of March was full of great news for the Rett Syndrome Community from the potential for federal funding in the United States to gene therapy for Rett given approval in Canada. You can find the news articles below. On this week's episode we chat with the Dahms Family from Minnesota in the United States. They share with us about their daughter Bennett as well as their involvement in the Midwest Rett Syndrome Foundation. To read more about the federal funding for Rett click here - https://www.rettsyndrome.org/federal-funding-bill-for-2022/ To read the announcement from Taysha about starting gene therapy in Canada click here - https://ir.tayshagtx.com/news-releases/news-release-details/taysha-gene-therapies-announces-initiation-clinical-0 To connect with the Midwest Rett Syndrome Foundation, click here - https://www.midwestrett.org/ And to find out more about the Rett clinic at Gillette Children's Specialty Hospital, click here - https://www.gillettechildrens.org/conditions-care/rett-syndrome 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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| BONUS | TikTok brings the 'pop'! | 11 Apr 2022 | 00:05:48 | |
Folks, I hope this song brightens your day as much as it has brightened mine. - Sam Jessie J-Domino (sped up) - https://youtu.be/j-XHEYqLxTs 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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 34 | Now is your chance to be heard!, The Jiselle Lauren Foundation has had amazing year, and more! | 28 Mar 2022 | 01:01:45 | |
On March 11th of this year there was a huge meeting for families, caregivers, individuals the Rett to share how Rett syndrome affects their lives. If you have or currently take care of an individual with Rett, go to the link below and submit your thoughts, comments, feelings. If you want to gain a better appreciation for how families with Rett loved ones manage day to day, take a listen at https://rettpfdd.org/ On the episode today we have the opportunity to talk with Jill and Chelsea from the Jiselle Lauren Foundation. They give us an update on the how things are going at the foundation and things to look forward to in the coming months and year. Notably the 2022 Spring Soiree happening on April 30th. To purchase tickets to the event visit the https://www.thejisellelaurenfoundation.org/copy-of-our-golf-events. To learn more about the Jiselle Lauren Foundation you can visit their website at https://www.thejisellelaurenfoundation.org/, or follow them on Facebook at The Jiselle Lauren Foundation and Instagram @thejisellelaurenfoundation. 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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 33 | Recapping the Mardi Gras fundraiser, Meet parents of Emma - Megan and Drew Case, and more! | 14 Mar 2022 | 01:10:39 | |
We share our thoughts on the Rocky Mountain Rett Association's 10 Year Clinic and Mardi Gras Celebration! Subscribe today so that you never miss an episode. And we'll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| BONUS | A chat with Dr. Alan Percy | 03 Mar 2022 | 00:49:24 | |
In this special bonus episode, Sam had a chance to sit down with Dr. Alan Percy at the University of Alabama at Birmingham and Children's of Alabama. Dr. Percy has been studying and researching Rett syndrome for nearly 40 years. Thanks to his work, he was able to help establish the Rett clinic at Children's of Alabama. Dr. Percy will be attending and speaking at the Rocky Mountain Rett Association Mardi Gras Fete. If you are in the area, we invite you and your friends to attend! It will be a fantastic evening filled with music, food, entertainment, and plenty of great auction items. Don't live nearby? That's okay! This year the event will have a virtual component attached to it as well. Those participating virtually will enjoy the same music and entertainment. You will also get access to the online auctions, both silent and live! So, head on over the Rocky Mountain Rett Association's website and purchase a ticket today! 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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 32 | Your top three apps are what?!, Skiing & Mardi party w/ Heidi Hedges-Greenhall, and more! | 28 Feb 2022 | 01:10:07 | |
While yes, this is a podcast about Rett Syndrome, sometimes it's nice to talk about other things. For their opening segment, Sam and Sarah talk favorite phone apps which can be found in the links below: Sam's #1 Bixby Routines #2 Grog's Animated Knots #3 Zedge; Sarah's #1 Youtube Music #2 Marco Polo #3 S'more Welcome again to Heidi Hedges-Greenall. We thought this was a great opportunity to check in with Heidi and see how things were going. Heidi shares her daughter Ellie's experience with skiing as well as gives us an update on the Rocky Mountain Rett Association. 2022 marks the 10 year anniversary of the Rett Clinic. The Rocky Mountain Rett Association invites YOU to join them for the 10 year Rett Clinic anniversary and Mardi Gras Celebration! For more information about the upcoming Mardi Gras Event and to buy tickets for the drawing visit Rocky Mountain Rett Association's website at https://www.rmrett.org/events/mardi-gras-and-10-year-anniversary 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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 55 | Trofinetide (aka Daybue) is approved!, Comunication chat w/ Rett University's Susan Norwell, and more! | 03 Apr 2023 | 01:18:58 | |
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 | |||
| 31 | Rare Disease Day is February 28th, The facts of occupational therapy w/ Courtney Odle, and more! | 14 Feb 2022 | 01:19:41 | |
Mark your calendars because February 28th is Rare Disease Day! We know there are a lot of obscure "holidays" such as act like a world traveler day and global handwashing day, (one would HOPE that would be everyday!), but join us as we chat about a day that can really make a difference in people's lives. Rare Disease Day is a day to bring awareness and learn something new about how you can make a difference. Visit the Rare Disease Day website at: https://www.rarediseaseday.org/ to learn more. Have you ever wondered where the term occupational therapy comes from? Well wonder no more because our guest this week is Courtney Odle who happens to be an occupational therapist and she was kind enough to tell us all about it and more. 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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 30 | Our recent trip to the Rett clinic, Fundraising through art w/ Nishaya Sharma and her parents, and more! | 31 Jan 2022 | 01:10:43 | |
Welcome back, everyone! And episode #30?! Can you believe it? We certainly can't. It has been such an incredible journey thus far, and we are looking forward to many more episodes to come. To begin with, Sarah shares about Zoey's most recent visit to the Rett Clinic at Children's Hospital in Colorado. Sam then shares some exciting news about the expansion of the Rett clinic at Children's Hospital Los Angeles. - https://www.newswise.com/articles/a-pediatric-center-enhances-care-for-rett-syndrome Need some positivity in your life??? Well, you've come to the right episode! Neelma, Nick, and Nishaya's view on life will brighten your day and make you want to give back. You can view Nishaya's paintings over on her website - https://www.nishayasharma.com/ You can also follow along with Nishaya's life on her Instagram - https://www.instagram.com/nishayas_journey/ Seal Lullaby by Eric Whitacre (Vocal Arrangement) - https://www.youtube.com/watch?v=GKrsDN91WgY Seal Lullaby by Eric Whitacre (Instrumental Arrangement) - https://www.youtube.com/watch?v=Sf5Q9e3YGbc 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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 29 | Eye-gaze technology research proves what we know, A grandparent's perspective w/ Carrie Jolley, and more! | 17 Jan 2022 | 01:08:13 | |
We tried something new this time, guys! During the first segment of the show, Sam talks about eye-gaze technology research. From there, we go to our interview, as Sarah talks with Carrie Jolley, Sarah's mom, and Zoey's grandma. Sarah loved chatting with her mom and getting a grandma's perspective of Zoey's diagnosis journey. Teachers' experiences of using eye gaze-controlled computers for pupils with severe motor impairments and without speech - https://www.tandfonline.com/doi/full/10.1080/08856257.2016.1187878 Sam mentioned in the episode that there is quite a bit of research coming out of Sweden regarding the use of assistive technology. Below are the names of 2 of those individuals working on this research and links to web pages that will show you some of the other research they have done. Patrik Rytterström's research - http://liu.diva-portal.org/smash/resultList.jsf?aq=%5B%5B%7B%22authorId%22%3A%22patry94%22%7D%5D%5D&aq2=%5B%5B%5D%5D&sf=all&aqe=%5B%5D&searchType=RESEARCH&sortOrder=dateIssued_sort_desc&onlyFullText=false&noOfRows=50&language=en&dswid=8320 Helena Hemmingsson's research - https://www.su.se/english/profiles/hhemm-1.333837 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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 28 | Testing for Rett syndrome, Meet Rosie & Magdalena Sniadewicz, and more! | 03 Jan 2022 | 01:14:52 | |
Happy New Year! This is our first episode of 2022 and we are so excited to have you all join us for another year of meeting new Rett families and professionals! This week's episode starts with Sam and Sarah share their thoughts on prenatal testing. Also on this episode they were honored to meet with Magdalena Sniadewicz from Iceland! Magdalena shares with us about her daughter Rosie's Rett Syndrome diagnosis and Magdalena's positive outlook on life. If you would like to get to know more about Magdalena and her family, you can follow her on Instagram: @living.with.rett What If?: Serious Scientific Answers to Absurd Hypothetical Questions - https://amzn.to/3EPOqPg When They Warn of Rare Disorders, These Prenatal Tests Are Usually Wrong - https://www.nytimes.com/2022/01/01/upshot/pregnancy-birth-genetic-testing.html 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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 27 | Our favorite Christmas memories, What is guardianship w/ Rhianna Sanford, and more! | 20 Dec 2021 | 01:16:02 | |
Happy Holidays pRETTy happy. family! In the beginning of this episode Sam and Sarah share some of our family traditions and Christmas memories. We are then joined by Rhianna Sanford as she fills us in on the ins and outs of her daughter, Kaiya legally becoming an adult. We talk about guardianship and what that could mean for families who have loved ones with disabilities. If you'd like to connect with Rhianna you can find her on Facebook: @Rhianna L Sanford, Instagram: @rhiannalsanford, or your web browser: rhiannasanford.com. If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation, where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 26 | Hope for a cure, Rett syndrome organizations around the world, and more! | 06 Dec 2021 | 01:10:34 | |
Welcome back to the show! This episode we sit down with each other to discuss our emotional journey with the announcement of the cancellation of the Novartis gene therapy drug, and we share about some great Rett Syndrome organizations. Webinar of Dr. Benke's Update of Clinical Trials: https://www.rmrett.org/news-from-rmra/update-on-gene-therapy-trials Rett organizations we shared about:
Honorable Mentions:
Our family Christmas music playlist: https://music.youtube.com/playlist?list=PLwEaQjXGzW1IIWMqz9d9Cw67F4sPDKxNY&feature=share If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| Happy [late] Thanksgiving! | 29 Nov 2021 | 00:01:23 | |
We will be posting a new episode next Monday as we took the week off to celebrate Thanksgiving! We are grateful for this wonderful community that we get to be part of, and we look forward to sharing with you next week's episode. Talk to you soon! If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation, where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 25 | People trigger me!, An incredible fundraiser w/ Mandy Fordyce, and more! | 15 Nov 2021 | 01:10:44 | |
Howdy! We chatted with Mandy Fordyce a while back and talked about her first time [ever] running a fundraiser. And let us tell ya something, she has some great tips on being successful! In fact, she did nearly 5 times her initial goal! What a first run!!! But before that, we talk about how sometimes well-meaning people say things that trigger us. We've all been there; it's frustrating. But we get it, and we are here to commiserate with you. If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation, where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we'll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 24 | Opportunities, cont. w/ Colleen English (Part 2), and more! | 01 Nov 2021 | 01:05:39 | |
Hey everyone! We're picking up where we left off with Colleen English. Her interview ran longer than any other we've had (and we loved it!) so we split it into 2 parts. Just a reminder, this episode discusses topics that may be difficult for some people to listen to (i.e. death of a child, special needs passing away process, organ donation). Before we jump into the interview, we chat about providing opportunities for those with disabilities that we sometimes overlook. Simply because an individual has a disability doesn't mean that can't or don't want to attend a higher education program. Maybe they're interested in a trade skill. Who knows?! If we don't tell them and share with them what's out there, then we as caregivers become the ones that handicap our special needs children. If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 23 | Sooo much equipment, Meet Colleen English (Part 1), and more! | 18 Oct 2021 | 01:02:25 | |
Welcome back, folks! This week is a very exciting episode where we were able to sit down with Colleen English. Colleen has an interesting perspective on Rett Syndrome. Her experience and knowledge are invaluable and we are grateful that she took the time to sit down and chat with us for this episode. But before the interview, we discuss equipment! Little did we know when we got Zoey's diagnosis that we would be acquiring a lot of new supplies! We've never sat down to write everything out before so this was an interesting experience for the two of us. Be sure to share with us what some of the items you and your family use to deal with Rett Syndrome! If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 54 | Big funding for Rett research, Duds and Studs of Equipment, and more! | 06 Mar 2023 | 01:10:10 | |
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 | |||
| BONUS | It's the pRETTy happy. Dad Chat! w/ guest host, Lonnie Morrison | 11 Oct 2021 | 00:37:55 | |
It's Rett Syndrome Awareness Month! (YAAAY!) And I, Sam, am taking some time to chat with some dads in our community. I'm calling it ... Dad Chat. (Very clever) This episode I speak with my good friend, Lonnie Morrison! Rapidfire
If you're interested in participating in Dad Chat, reach out to prettyhappypod@gmail.com. If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 22 | It's Rett Syndrome Awareness Month, Speech & Parenting w/ Mara Contes, and more! | 04 Oct 2021 | 01:07:24 | |
Happy Rett Syndrome Awareness month! Each year we take the month of October to help bring awareness to Rett Syndrome. We share some of our ideas of how to bring awareness to the cause in some different ways that you may not have thought of before. We also sat down with Mara Contes to talk about speech therapy, special needs parenting, and more. Mara's step-daughter has Rett Syndrome, and Mara's younger sister also has special needs. So, she has a unique perspective on being in the special needs community being a sister and a parent. You can connect with Mara on her Instagram, @sincerelyspecialneeds. There she shares great ideas, tips, etc. Be sure to check her out! If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 21 | We've been camping, Meet Korrie and Brooke Sanders, and more! | 20 Sep 2021 | 01:07:17 | |
It's been a great couple of weeks, folks. And during that time we had the awesome opportunity to meet some new friends! Korrie Sanders and her mom Brooke live in California. Brooke took the time to sit down and share with us about their family, home life, and most importantly, Korrie. Brooke posts quite a bit about dealing with Rett Syndrome on Instagram so head over to @luckylinewife to connect with her and see what we mean when we say that Korrie has an infectious smile. If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 20 | Dads & Father Figures ... come share your stories!, Sarah & Lonnie Morrison have a special announcement, and more! | 06 Sep 2021 | 00:48:09 | |
It has been too long! We are excited to be back and meeting new friends. On this episode of the pRETTy happy. podcast, Sarah and Sam invite dads to come be featured on a special October Rett Syndrome Awareness Month episode(s), and they meet Sarah and Lonnie Morrison who have an AMAZING announcement to bring happiness to all newly diagnosed families. Have a different platform you would like to listen to the show on? Click here to see if it has been added to your platform of choice. If you're a dad / father figure in the Rett Syndrome community, Sam would like to meet you! Just fill out this online form and he will reach out to you about setting up a time to sit down and meet one another. Amazon Shopping List for Adapting Toys: If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| See you in a few weeks! | 26 Jul 2021 | 00:01:34 | |
We are going to take the next few weeks off as we will be out and about! We'll be back before you know it. Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Facebook - https://www.facebook.com/prettyhappypod/ Instagram - https://www.instagram.com/prettyhappypod/ Send us a voice message - https://anchor.fm/prettyhappypod YouTube - https://youtube.com/channel/UCtEy2XghfMRpQAFgaMAI4VQ | |||
| 19 | Zoey has been riding horses, Sarah & Sam talk IEP madness, and more! | 12 Jul 2021 | 01:05:31 | |
This week we sit down with ... ourselves! We had quite an interesting experience when it came to Zoey's most recent IEP meeting. (We hope this can at least bring a bit of comfort to other parents of children with IEPs.) Also, with just 4 riding sessions, Zoey has already started seeing improvements in her stability! It's super exciting for our family. To find out more about hippotherapy, visit the American Hippotherapy Association's website. (Find a Therapist) You can listen to Sam's sister's podcast, Churro for your Thoughts, by clicking here. If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 18 | Growing our Rett syndrome community, Elizabeth w/ @graceforrett shares stories, and more! | 28 Jun 2021 | 01:12:44 | |
Sarah and Sam sit down with Elizabeth who is the mother of Grace. We talk everything from moving countries, swear words on eye gaze devices, and the horrible cycle of raising money for Rett Syndrome awareness from Rett Syndrome families. Follow Grace and her mom at @graceforrett on Instagram. You can also read Elizabeth's amazing article about the importance of growing awareness outside of our community. If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 17 | Understanding parenting stress and trauma, Getting your first accessible vehicle w/ Tracey Hoyng, and more! | 14 Jun 2021 | 00:56:57 | |
This was such a great episode to put together. First off, Sarah found a phenomenal article that helps put in perspective the importance of understanding that as parents of children with special needs, we deal with chronic traumatic stress disorder: we're living it now! And Tracey Hoyng comes back on the show to tell us all about her experience in finding & purchasing her family's first accessible vehicle. You can read the article that Sarah referenced here. Be sure to visit Jovie & Tracey's website over at teamjovie.com. You can find out more about Jovie's story and about what Rett Syndrome is. View Convaid's Carrot 3 Child restraint by clicking here. The most beautiful cover of Fireflies by Owl City (@collinvodicka) If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 16 | Sam shares about his emotional growth, Meet Courtney Coleman of Frankie Says Fight Rett, and more! | 31 May 2021 | 01:08:09 | |
On this week's episode we go deep on a topic that many people see as taboo. Sam shares about his emotional growth thanks to having Zoey in his life, we meet Courtney Coleman who is the mother of Frankie, a girl with Rett Syndrome, and a founder of the nonprofit, Frankie Says Fight Rett. To find out more about how you can support the great things happening over at Frankie Says Fight Rett, visit their website. You can also check them out on Facebook as well. This man must be protected at all costs! Daði Freyr – UNO (Little Big Cover) If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 15 | Exciting news from RettSyndrome.org, Samantha Brant shares about connecting with others, and more! | 17 May 2021 | 01:03:46 | |
RettSyndrome.org announces their name "change", and Samantha Brant, Family & Community Engagement Manager for International Rett Syndrome Foundation, shares how connecting with others in the community has brought joy to her and so many others. In fact, Samantha was the very first person we met in the Rett Syndrome community! And our family in incredibly grateful for her. To read the press release regarding International Rett Syndrome Foundation recognizing 15 clinics, click here. If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 53 | Businesses started because of Rett, What is a Rett clinic w/ Tristen Dinkel, and more! | 20 Feb 2023 | 01:08:45 | |
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 | |||
| 14 | Trying hippotherapy w/ Zoey, Kourtney Barnum talks communication, and more! | 03 May 2021 | 01:14:46 | |
On today's episode we talk about Zoey having recently received a grant for hippotherapy! (And no, she doesn't get to play with hippos.) We also sit down with Kourtney Barnum to talk all thing communication, beginning with her experience as a sibling of an individual with Rett Syndrome to special education & communication. To find out more about hippotherapy, visit the American Hippotherapy Association's website. (Find a Therapist) For more information on Rett University, be sure to visit their website. It's there that you will be able to connect with Kourtney as well as the other amazing individuals on their team. If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 13 | Traveling hacks, Doin' Disney parks with a disability (feat. Lindsay Emery), and more! | 19 Apr 2021 | 01:11:39 | |
On this episode of the pRETTy happy. podcast we take it to the road, figuratively. We talk about all things travel and specifically doing Disney Parks such as Disneyland and Walt Disney World. Check out the Travel Safety Bed from Safe Place Bedding: https://safeplacebedding.com/products/safe-place-travel-bed-blue-bed-only Baby Millenium Falcon: https://vegandisneyfood.com/hidden-mini-millennium-falcon-on-the-millennium-falcon-in-star-wars-galaxys-edge/ Connect with Lindsay and the awesome team at Smart Moms Travel here: https://smartmoms.typeform.com/to/M4XXpu5N lindsayemery@smartmomstravelagents.com If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 12 | AmazonSmile makes us smile, Meet Finley, Caley, & Bryan Engnell, and more! | 05 Apr 2021 | 00:55:51 | |
We sit down this week with an AWESOME family from the Midwest. We discuss family fun, education, and their diagnosis story. After you finish listening to the episode, be sure to head over to their Facebook and check them out. https://www.facebook.com/fightingforfinley1 For more information on how you can use AmazonSmile, use this link: https://smile.amazon.com/ Don't know if your company provides a match for charitable giving? Use this website to see if they do: https://ww2.matchinggifts.com/search/unh If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||
| 11 | New gene therapies to fight Rett syndrome, Homeschooling Sierra w/ Elaine Moffatt, & more! | 22 Mar 2021 | 00:46:28 | |
This month we talk about some very exciting news when it comes to treatments for Rett Syndrome! After you listen to the episode, be sure to hop over to this website to read more about it. - https://rettsyndromenews.com/2021/02/12/novartis-seeking-approval-by-years-end-clinical-testing-rett-gene-therapy/ We also sit down with Elaine Moffatt who is the mother of Sierra. Elaine has been homeschooling Sierra for many years so she is a wonderful resource to hear about the ups and downs to having your child carry out their education at home. To read the 2005 gene therapy study from Kurume University, Kurume, Fukuoka, Japan, click here. To review laws and regulations about homeschooling in your state, click here. Interested in joining the Homeschooling My Child With Rett Syndrome Facebook Group? Click here! If you are a newly diagnosed family, you can connect with the International Rett Syndrome Foundation where you can begin connecting with the community. - https://rettsyndrome.org Subscribe today so that you never miss an episode. And we’ll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod | |||