pRETTy happy. | Hope and Rett syndrome – Détails, épisodes et analyse

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pRETTy happy. | Hope and Rett syndrome

Sarah and Sam

Enfants & Parentalité

Fréquence : 1 épisode/22j. Total Éps: 65

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

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https://anchor.fm/prettyhappypod
121 partages
https://drum.io/prettyhappypod
107 partages
https://www.rettsyndrome.org/for-families/newly-diagnosed/
48 partages

https://www.facebook.com/be.Response.able
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https://www.facebook.com/prettyhappypod/
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https://www.facebook.com/rettperu/
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https://www.youtube.com/channel/UCRUMx-tvB1w2qXG4udgmL0w/featured
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57 | We're back!!!

Saison 4 · Épisode 1

lundi 12 août 2024 • Durée 01:25:10

That's right, ladies and gentlemen - we are back at it and excited to begin connecting with others again!

⁠Acadia working to see Rett therapy Daybue approved in Japan, Europe⁠

What great news for individuals with Rett syndrome across the world! We are hopeful that by making this drug more widely available to those that need, improvements will be able to be made for the betterment of all!

⁠Potential cancer drug slows Rett's progression, aids survival in mice⁠

This news is also very exciting. It's always great to hear about progress being made in science to help individuals with Rett. In the end, these types of studies just help us better understand how Rett is. (And yes, I did mean to phrase it like that.)

⁠Give Back & Gear Up T-shirt Fundraiser!⁠

We are excited to be partnering with ⁠Frankie Says Fight Rett⁠ to bring to you this great t-shirt! All funds from this sale will go to Frankie Says Fight Rett, a 501(c)3 non-profit that not only helps bring awareness to Rett syndrome, but also helps those in need with the expenses of traveling to medical appointments, receive adaptive equipment, helps provide respit for parents and caregivers. Support this fundraiser today by ⁠purchasing a t-shirt⁠ before it's too late - pre-orders end September 15, 2024.

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

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

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

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A little update on us.

Saison 3

lundi 15 mai 2023 • Durée 03:28

We know it's been a minute since we released an episode - but we're still here.

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

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We're taking a break... for 1 week...

Saison 2

lundi 7 novembre 2022 • Durée 00:52

We are taking a little break this week after a crazy long Rett Syndrome Awareness Month. We will talk with you next week!

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

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

----------

Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypodRe

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

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48 | Girl w/ Rett joins college softball team, Meet Karley Boczek - mum to Charlotte, and more!

Saison 2 · Épisode 24

lundi 24 octobre 2022 • Durée 01:19:32

The theme for our top three this week is Rett Syndrome in the news. We start with an 8 year old who had the opportunity to be signed on the Alabama State University's Lady Hornet Softball Team. Our second news is about a special awareness art piece that you can be part of and that created by an artist who has Rett syndrome. And finally we share about a family in the UK who found their child's diagnosis through the 100,000 Genomes Project. All link to articlescan be found below.

8 year old Alabama State University Lady Hornet

Confetti: Eye Gaze Designed by Emily Shifflet

Diagnosis through the 100,000 Genomes Project

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

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

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47 | A few favorite Rett syndrome awareness posts, Ethical communcation w/ Gerna Scholte (Part 3), and more!

Saison 2 · Épisode 23

lundi 10 octobre 2022 • Durée 01:08:56

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

With the release of this episode, we have come to the end of our interview with Gerna. We are so grateful for all the time she took to talk with us and teach us how to be better communicators and advocates. If you would like to contact Gerna, you can connect with her at be.response.able@gmail.com, or you can find her on Youtube, Facebook, Instagram, and Tik Tok.

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://drum.io/prettyhappypod

46 | Trofinetide accepted for review, Augmentative and adaptive communication w/Gerna Scholte (Part 2), and more!

Saison 2 · Épisode 22

lundi 26 septembre 2022 • Durée 01:03:49

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

We continue our conversation with speech language pathologist, Gerna Scholte about communication and inclusion. Gerna share with us ways to be better communicators and well as how to help those around us communicate with our loved ones. If you'd like to get in contact with Gerna you can email her at be.response.able@gmail.com or you can find her on Youtube, Facebook, Instagram and Tik Tok.

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://drum.io/prettyhappypod

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

45 | Preparing for Rett Syndrome Awareness Month, Discussing effective communication w/ Gerna Scholte (Part 1), and more!

Saison 2 · Épisode 21

lundi 12 septembre 2022 • Durée 01:02:45

On this week's top three we share about preparing for Rett Syndrome Awareness Month and the new resource that will be available on September 18th on our website. It will make sharing about Rett on social media a breeze. We also talk about the fact that we now have a new website! There are some great resources currently such as adapted toys and links to the podcast and we will be adding more as time goes. Lastly we chat about some new reasearch related to the causes of Rett symptoms. The link for that article is attached below.

Our main guest this week is the incredible Gerna Scholte. (pronounced Hair-na). Gerna is from the Netherlands but we actually met her at the Ascend 2022 Rett Syndrome National Summit. Gerna specializes in AAC and is extremely passionate about helping individuals be able to communicate and express themselves. If you'd like to get in contact with Gerna you can email her at be.response.able@gmail.com or you can find her on Youtube, Facebook, Instagram and Tik Tok.

High miR-101a Levels May Underlie Processes Leading to Rett Symptoms - https://rettsyndromenews.com/news/elevated-mir-101a-underlie-processes-leading-symptoms-mice/

Mille's Secret World - A life with Rett syndrome - https://www.youtube.com/watch?v=M-_jvs3YMoM

44 | Updates in the world of Rett, Our car & such, and more!

Saison 2 · Épisode 20

lundi 29 août 2022 • Durée 01:17:45

The world of Rett is constantly changing and evolving. On this week's episode we share a couple of those research studies to help get you up to date on what's happening with Rett. If you would loke to learn more about any of the studies we referenced, we've attached the links below.

Also on this week's episode we share about our van and Zoey's adaptive seat. It wasn't an easy decision to make and one that we had been putting off for a while, but we finally did it. We've now had our car almost a year and we want to share with you the pros, cons, and quirks about our Chrysler Pacifica and the Turny Evo Seat we had installed for Zoey. It makes her life and our a little easier.

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

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

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

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

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

43 | Back to school, Chatting with Anna Dance-Heimburger about self-care, and more!

Saison 2 · Épisode 19

lundi 15 août 2022 • Durée 01:17:06

School is just around the corner and we want to make sure you and your loved ones are prepared for whatever it may through at you. Our top Three this week focuses on some tips/tricks to make the school transition move smoothly.

As parents of a child with a disability we all know the importance and the struggle of getting the much needed self-care. Well on today's episode we are joined by Anna Dance-Heimburger, mother to Lucy who is 13 and has Rett Syndrome and Anna has some great tips for finding and making time for your personal self-care. Tune in to learn about ceiling and floor goals as well as some fun other tidbits.

To watch the sheep dog clip on YouTube click here.

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://drum.io/prettyhappypod

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

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42 | Storing all those medical files you've got, cont. w/ Melissa & David Benay (Part 2), and more!

Saison 2 · Épisode 18

lundi 1 août 2022 • Durée 01:02:13

We start off by talking about the different ways to store your medical information. There are a lot of options out there and we discuss some of the ways people are keeping all the important data organized. From binders to cloud storage and apps to banker boxes, we talk pros and cons.

This episode we continue our interview with David and Melissa about inclusion and how they are working to change local playgrounds to be not just "accessible" but inclusive. If you would like to support their efforts you can follow along on Facebook and Instagram @TeamLolo2021

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://drum.io/prettyhappypod

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

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pRETTy happy. | Hope and Rett syndrome – Détails, épisodes et analyse

Détails du podcast

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Podcasts Similaires Basées sur le Contenu

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