pRETTy happy. | Hope and Rett syndrome

By Sarah and Sam

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 hav... more

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FAQs about pRETTy happy. | Hope and Rett syndrome:

How many episodes does pRETTy happy. | Hope and Rett syndrome have?

The podcast currently has 68 episodes available.

pRETTy happy. | Hope and Rett syndrome episodes:

March 14, 2022 33 | Recapping the Mardi Gras fundraiser, Meet parents of Emma - Megan and Drew Case, and more!
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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Social Media, Podcast Platforms, & more! - https://drum.io/prettyhappypod
Send us a voice message - https://anchor.fm/prettyhappypod
...more
1h 11min
March 03, 2022 BONUS | A chat with Dr. Alan Percy
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
...more
50min
February 28, 2022 32 | Your top three apps are what?!, Skiing & Mardi party w/ Heidi Hedges-Greenhall, and more!
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
...more
1h 11min
February 14, 2022 31 | Rare Disease Day is February 28th, The facts of occupational therapy w/ Courtney Odle, and more!
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
...more
1h 20min
January 31, 2022 30 | Our recent trip to the Rett clinic, Fundraising through art w/ Nishaya Sharma and her parents, and more!
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
...more
1h 11min
January 17, 2022 29 | Eye-gaze technology research proves what we know, A grandparent's perspective w/ Carrie Jolley, and more!
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
...more
1h 9min
January 03, 2022 28 | Testing for Rett syndrome, Meet Rosie & Magdalena Sniadewicz, and more!
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
...more
1h 15min
December 20, 2021 27 | Our favorite Christmas memories, What is guardianship w/ Rhianna Sanford, and more!
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
...more
1h 17min
December 06, 202126 | Hope for a cure, Rett syndrome organizations around the world, and more!
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
...more
1h 11min
November 29, 2021 Happy [late] Thanksgiving!
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
...more
2min

FAQs about pRETTy happy. | Hope and Rett syndrome:

How many episodes does pRETTy happy. | Hope and Rett syndrome have?

The podcast currently has 68 episodes available.