pRETTy happy. | Hope & Rett syndrome

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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod

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://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod

Wow, these last two weeks have been an absolute whirlwind when it comes to Rett syndrome research. To start with, Neurogene announced on January 23, 2023 that they had received approval from the Food and Drug Administration (FDA) in the United States to begin human clinical trials of their gene therapy drug, NGN-401. This was an absolute shock to the community considering that it's been less than a year since Neurogene announced plans to begin developing a drug. Neurogene Initial Announcement (May 18, 2022) - https://www.neurogene.com/press-releases/neurogene-announces-new-development-program-in-rett-syndrome-utilizing-novel-exact-technology-platform/ Neurogene EXACT Technology Explained - https://www.neurogene.com/our-technology/ Rett Syndrome Research Trust sits down with Neurogene - https://youtu.be/QuTu_zLcVoI We also continue our conversation with Dionne Snyders by discussing more specifics of what it's like running a school with such a diverse student population. To learn more about Nova School, visit their website. https://www.nova-school.co.za/ If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families! Subscribe today so that you never miss an episode. And we'll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod

Welcome back to the podcast everyone! Glad to be back after our end of year break.  To start this episode we are going to be talking about Rett in the news.  There was a new MECP2 gene mutation found and connected to Rett Syndrome. Is that a good thing? In short, yes! That means that we are learning and research is progressing. If you want to learn more by reading the article you can find it by clicking here. We also share about an app developer that donated to IRSF. While we love that there is more money going to Rett research make sure you do your research when choosing what apps to use. Sam did a deep dive into this one and didn't find much.  You can read more about their donation here.  For our final top three, we talk about a study that looks at Rett affecting sleep....well duh!    It looks at sleep structure abnormalities and you can find more information about that article here. BONUS: We need to correct something that we've said in the past.  There have in fact been other gene therapy trials in the US.  We're sorry for the confusion. We won't go into all the details but if you'd like to learn more about the history of gene therapy in the US you can find it on this website. On this week's episode, we welcome Dionne Snyders to the podcast.  Dionne is from South Africa and is very active in the Rett community and with Rett SA.  Dionne joins us to talk about her daughter who has Rett as well as her response to inadequate schooling for her daughter.  Dionne along with another parent and an SLP started a school! Nova School is specifically for learners using AAC.  They currently even have some students that do satellite schooling and use zoom to access the classes.  Every learner has a communication partner who makes sure all the environmental and personal needs are met so the teachers can focus on what they do best...teaching!  If you would like to learn more about Nova School you can visit their website or follow them on Instagram and Facebook. If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families! Subscribe today so that you never miss an episode. And we'll see you next time! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod Send us a voice message - https://anchor.fm/prettyhappypod

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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypodRe Send us a voice message - https://anchor.fm/prettyhappypod

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! ---------- Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypodRe Send us a voice message - https://anchor.fm/prettyhappypod

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

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

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

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

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

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

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

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

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

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

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

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

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

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:  Katie Beckett Program, https://www.medicaid.gov/resources-for-states/downloads/macpro-ig-children-under-age-19-with-a-disability.pdf  Personal Care Services, https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/self-directed-personal-assistant-services-1915-j/index.html  Idaho Resources:  Children's Developmental Services in Idaho, https://healthandwelfare.idaho.gov/services-programs/medicaid-health/apply-childrens-developmental-disabilities-services  Intervention Service Providers in Idaho, https://healthandwelfare.idaho.gov/providers/children-intervention-service-providers/about-children-intervention-service-providers  Care Coordinators in Idaho, https://healthandwelfare.idaho.gov/services-programs/children-families/child-and-family-services-and-foster-care/coordinator-contacts  Colorado Resources:  Children's Home and Community Based Waiver (CHCBS) including In Home Support Services (IHSS), https://hcpf.colorado.gov/childrens-home-and-community-based-services-waiver-chcbs  Children's Extensive Support Wavier (CES) including parent CNA, https://hcpf.colorado.gov/childrens-extensive-support-waiver-ces  Intelliride https://gointelliride.com/  Family Support Services Program, https://hcpf.colorado.gov/family-support-services-program-fssp  Sarah's favorite meditation app: Headspace: https://www.headspace.com/  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

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

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

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

We share our thoughts on the Rocky Mountain Rett Association's 10 Year Clinic and Mardi Gras Celebration! Family and individual support is so incredibly important for everyone and especially for disabled individuals and their families. Drew and Megan Case, parents Emma with Rett, join the episode today and share how incredibly important support is in their immediate community such as Darby's Dancers and from other families in similar situations. If you would like to connect with the Case family you can find them 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

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

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

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

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

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

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

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

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: International Rett Syndrome Foundation - https://www.rettsyndrome.org/ Girl Power 2 Cure - https://www.girlpower2cure.org/ Rett Syndrome Research Trust - https://reverserett.org/ Rett UK - https://www.rettuk.org/ Rett Syndrome Europe - https://www.rettsyndrome.eu/ Rett Syndrome Association of Australia - https://rettaustralia.org.au/ Ontario Rett Syndrome Association (Canada) -  https://www.rett.ca/ Rett Syndrome Association Israel - https://rett.org.il/ Rett South Africa - http://rett-sa.co.za/ Honorable Mentions:  Rett Syndrome Angels (Massachusetts, USA) - https://rsangels.org/ Rocky Mountain Rett Association (Colorado, USA) - https://rmrett.org Association for the Assistance to Patients with Rett Syndrome (Russia) - http://xn--e1avha.xn--p1ai/ Rett Syndrome-Peru - https://www.facebook.com/rettperu/ Reverse Rett (United Kingdom) - https://www.reverserett.org.uk/ Rett Family Care Center (China) - http://blog.sina.com.cn/rettgirl Taiwan Rett Syndrome Association - http://rett.org.tw/ 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

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

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

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

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

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 Travel Tips to Get Good Grades Tunes & Things Every Man / Dad Should Know 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

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

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

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: Soldering Kit Female Jack Socket Female Jack Wire 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

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

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

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

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

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

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

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

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

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

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

Kim Keane who is a licensed Kindermusik educator sits down with us to talk about the importance of music in a child's development. She also shares how you can participate in her weekly classes. You should definitely check them out! Sarah also talks about how there are 2 companies working to receive approval from the FDA to begin gene therapy trials. This could potentially mean that a cure, or at least a therapy, for Rett Syndrome is right around the corner; how exciting! Read a May 1, 2005 journal on reversing Rett Syndrome: https://www.cell.com/molecular-therapy-family/molecular-therapy/fulltext/S1525-0016(05)00298-4 To join Kim Keane's Kindermusik classes, click here. https://www.facebook.com/groups/560228311336323 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

We had the absolute pleasure of meeting Jill & Bailey Pratt, Co-Founders of The Jiselle Lauren Foundation. Their mission is "...to improve the experience and potential for all special needs kiddos..." They are such wonderful people and we thoroughly enjoyed getting to know the 2 of them and the purpose of the foundation. To find out more info on The Jiselle Lauren Foundation, visit their website. https://www.thejisellelaurenfoundation.org/ If you'd like to listen to Sam's sister's Disney podcast, check it out here. https://anchor.fm/annie-jimenez 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

This week we would like to extend a special invitation to all of our listeners to register for the special Mardi Gras fundraising event on February 19th. This event is hosted by the Rocky Mountain Rett Association (RMRA) who manages the Rett Clinic at Children's Hospital in Aurora, CO. The money raised at this event will go towards supporting the continued operation of this clinic for the hundreds of patients who benefit from its resources. More information regarding this event can be found by clicking here or the link below: https://www.flipcause.com/secure/cause_pdetails/MTAzNzQ0 To find out more information on the Rocky Mountain Rett Association, visit their website at www.rmrett.org. If you are interested in a Safe Place Bedding, check out their website: www.safeplacebedding.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

Lori & Jim Schroath stopped by to chat with us about their amazing daughter Hallie, receiving a diagnosis, Tobii devices, and more! Subscribe today so that you never miss an episode. And we’ll see you next time! 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

Tracey Hoyng joins us for an exciting interview to share experiences on advocacy and family dynamics. Sam also shares a story about grief and learning to accept our current situations. Subscribe today so that you never miss an episode. And we’ll see you next time! 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

Zoey's preschool teacher, Kelly Melkus, comes on the show to provide an unfamiliar perspective. She talks about IEPs, advocacy, and what we as parents can do to assist in the classroom. We also have an incredibly special guest join us to talk about what she would like to do in the new year. 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

Sarah & Sam sit down with Jenny & AJ Tesler, parents of Magnolia. Maggie's story has been put on the big screen, Magnolia's Hope, and is available from now until December 31, 2020. You can watch it online by clicking here or by using the link below. Also, Sarah demands that ice cream be served with every slice of pie.  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

Sarah introduces us to a special family who recently was able to visit a Rett clinic. They share with us their experience as well as how they've handled their first year with a diagnosis. Sam shares some fun tech ideas to be able to give your child more autonomy in your home using a smart speaker. 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

We're so excited to introduce to you Kennedy and Misty Startup, a daughter-mother duo from California. Misty shares what it's like being the mother of Kennedy and what their experiences have been.  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

Welcome to our first episode! We start out by introducing you to the show and then share our story. We're excited to be here and to have you along for the ride. 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

Welcome to pRETTy happy. podcast. A show for families and friends in the Rett Syndrome community. Join us each episode as we explore the dynamics of special needs families, talk parenting, meet friends, and just have a great time. Hit subscribe wherever you get your podcasts. And we’ll see you in the next episode. ---------- Facebook - https://www.facebook.com/prettyhappypod/ Anchor - https://anchor.fm/prettyhappypod