pRETTy happy. | Hope and Rett syndrome

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

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

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

If you are a newly diagnosed family, you can find loads of information regarding Rett syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

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On today's top three, we looked at the headlines to see what was new for Rett syndrome. We found great information on the history of Trofinetide as well as information about the end of the clinic trial. If you haven't heard about Trofinetide yet, it is the first drug that potentially will soon be on the market to treat symptoms of Rett. You can read more about that here. Second, China was sharing the love and sharing information about Rett syndrome on one of their biggest news outlets.  That's pretty exciting when you think about all the good it can do to spread awareness. Clink here to read the article. Third is two big donations to Rett syndrome research! One donation went to the Rett Syndrome Research Trust (RSRT) specifically for the development and testing of a product called Emerald.  Its a device designed to monitor vitals from a distance. Learn more about Emerald here. The other donation was given to the International Rett Syndrome Foundation for the purpose of furthering the research of Rett in males. This was donated by a family in honor of their son Otis who as Rett syndrome. You can learn more about their story here.

When you have a medically complex child finding the right equipment can be difficult. And when you do find equipment that works, there's no guarantee it will continue to work as your loved one ages or their diagnosis progresses.  We haven't been on this journey long but we have learned about some things that help and some that we thought might but in the end weren't the right fit.  Today we're talking about 3 pieces of equipment that didn't work out and 3 that we really love.

If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

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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!

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

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

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

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

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

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

If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

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Welcome back to the podcast everyone! Glad to be back after our end of year break.  To start this episode we are going to be talking about Rett in the news.  There was a new MECP2 gene mutation found and connected to Rett Syndrome. Is that a good thing? In short, yes! That means that we are learning and research is progressing. If you want to learn more by reading the article you can find it by clicking here. We also share about an app developer that donated to IRSF. While we love that there is more money going to Rett research make sure you do your research when choosing what apps to use. Sam did a deep dive into this one and didn't find much.  You can read more about their donation here.  For our final top three, we talk about a study that looks at Rett affecting sleep....well duh!    It looks at sleep structure abnormalities and you can find more information about that article here. BONUS: We need to correct something that we've said in the past.  There have in fact been other gene therapy trials in the US.  We're sorry for the confusion. We won't go into all the details but if you'd like to learn more about the history of gene therapy in the US you can find it on this website.

On this week's episode, we welcome Dionne Snyders to the podcast.  Dionne is from South Africa and is very active in the Rett community and with Rett SA.  Dionne joins us to talk about her daughter who has Rett as well as her response to inadequate schooling for her daughter.  Dionne along with another parent and an SLP started a school! Nova School is specifically for learners using AAC.  They currently even have some students that do satellite schooling and use zoom to access the classes.  Every learner has a communication partner who makes sure all the environmental and personal needs are met so the teachers can focus on what they do best...teaching!  If you would like to learn more about Nova School you can visit their website or follow them on Instagram and Facebook.

If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

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Well folks, we made it to episode 50!  This episode we start off by talking about three things we are grateful for. From the podcast to each other we have a lot to be grateful for.  We wanted to share our excitement of reaching episode 50 by giving everyone a discount in our store!  We have created a special coupon so that if you spend $50.00+ US on our website, and apply the code FREESWITCH22 at checkout you can get a free switch.  Just make sure you put a switch in your basket and then enter the code.  We would love to send you one!

Visit our shop today! - https://www.prettyhappy.place/shop

This week to celebrate our 50th episode we share some of our favorite episodes from the last two years.  We talk about Episode 4 with Jenny and AJ Tesler and how talk about how much we've grown since listening and chatting with the Teslers.  We talk tech from Episode 6 with Tracey Hoyng and how we are using that at home as well as setting boundaries for how we can realistically advocate.  In Episode 24 we discuss chatting with Colleen English and how much her words spoke to us and have influenced our future choices.  Anna Dance-Heimburger also gave us some fabulous advice in Episode 43 about setting goals and habits using the ceiling and floor method.  If you have not had a chance to listen to these or any others episodes, please make some time because they may very well change your life.

If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

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

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

Taysha Gene Therapies receives a $50 million investment from Astellas

Report from the Externally-Led Patient-Focused Drug Development Meeting

On this week’s episode we sat down with Kevin Pierce the Chief Operating Officer for Girl Power 2 Cure. Kevin shares with us how he got started with the organization and how the organization itself has grown since it’s inception. As a grandparent of an individual with Rett he brings understanding and personal passion to his position. We learned not only about Girl Power 2 Cure but also about their connection to Rett University and how the organizations support one another.

If you would like to learn more about Girl Power 2 Cure you can find them on their website, www.gp2c.org or on Facebook and Instagram.

If you would like to learn more about the services offered by Rett University you can find them at their website, www.rettuniversity.org or on Facebook and Instagram.

If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

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8 year old Alabama State University Lady Hornet 

Confetti: Eye Gaze Designed by Emily Shifflet

Diagnosis through the 100,000 Genomes Project

This week we chat with Karely Boczek.  Karely comes to us from Australia to chat about her daughter Charlotte who has atypical Rett Syndrome. Charlotte is an incredible 7 year old who loves school, swimming and music. Karely shares what it is like for her family to have a loved one with atypical Rett, which can sometimes make it harder to relate to other families with Rett.  If you would like to get in contact with Karely you can find her on Instagram at The Voice of Our Charlotte.

If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

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October is Rett Syndrome Awareness Month, and in this week's episode, we chat about three of our favorite posts about Rett shared by others during the first week of October. In addition, there's an informational Tik Tok by Rozita Tyler, an insightful blog post by Colleen English, and a creative display for awareness from Brazil. You can also find more of our favorite posts about Rett Syndrome from this month on the blog on our website.

With the release of this episode, we have come to the end of our interview with Gerna. We are so grateful for all the time she took to talk with us and teach us how to be better communicators and advocates. If you would like to contact Gerna, you can connect with her at 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!

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On this week's episode we talk about Acadia's announcement that Trofinetide, the first ever potential drug for Rett treatment, was accepted for filing and review by the FDA.  We breakdown the three things that you need to know from that press release. You can find that announcement here.

We continue our conversation with speech language pathologist, Gerna Scholte about communication and inclusion.  Gerna share with us ways to be better communicators and well as how to help those around us communicate with our loved ones.  If you'd like to get in contact with Gerna you can email her at 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!

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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!

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

Older Age, Muscle Stiffness Tied to Worse Scoliosis in Rett Syndrome - https://rettsyndromenews.com/news/older-age-muscle-stiffness-tied-worse-scoliosis-rett-syndrome/

Clinical and genetic correlations of scoliosis in Rett syndrome - https://link.springer.com/article/10.1007/s00586-022-07217-8

Intensive Anti-Scoliosis Postural Intervention for Individuals With Rett Syndrome Supported by a Smartphone Application - https://clinicaltrials.gov/ct2/show/NCT05488938

Muscarinic Receptor Modulator Shows Promise in Rett Mouse Model - https://rettsyndromenews.com/news/muscarinic-receptor-modulator-shows-promise-rett-mouse-model/

Clinical and Preclinical Evidence for M1 Muscarinic Acetylcholine Receptor Potentiation as a Therapeutic Approach for Rett Syndrome - https://link.springer.com/article/10.1007/s13311-022-01254-3

If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

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To watch the sheep dog clip on YouTube click here.

If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

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

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

If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

----------

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

This week we also continue our conversation with Tanya Keller a speech language pathologist and advocate that everyone can communicate. Tanya has been working with individuals with Rett for some time now and has lots of insights and a wonderful perspective when it comes working on their communication.  If you would like to get in contact with Tanya, you can find her on her website: everyonecancommunicate.com

If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

----------

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Sam and Sarah's guest on the show today is Tanya Keller.  Tanya is a speech language pathologist and strong advocate for individuals with Rett syndrome and other complex medical needs. Sam and Sarah chat with Tanya about her journey of working with individuals with Rett as well as advocacy, and supporting families.  We were all so chatty that we split this interview in two.  If you would like to get in contact with Tanya, you can find her on her website: everyonecancommunicate.com

If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

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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!

----------

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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

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 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!

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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!

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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!

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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!

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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!

----------

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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!

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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!

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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!

----------

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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!

----------

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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!

----------

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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!

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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

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

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

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

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

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

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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

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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

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

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

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!

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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!

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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!

----------

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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

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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

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