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pRETTy happy. | Hope & Rett Syndrome

pRETTy happy. | Hope & Rett Syndrome

By Sarah & Sam
Bringing families and friends together from the Rett Syndrome community to discuss life, research, and just to have a fun time. New episodes are release every other Monday morning!
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23 | Sooo much equipment, Meet Colleen English (Part 1), and more!
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
01:02:15
October 18, 2021
BONUS | It's the pRETTy happy. Dad Chat! w/ guest host, Lonnie Morrison
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
37:55
October 11, 2021
22 | It's Rett Syndrome Awareness month, Speech & Parenting w/ Mara Contes, and more!
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
01:07:14
October 4, 2021
21 | We've been camping, Meet Korrie and Brooke Sanders, and more!
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
01:07:06
September 20, 2021
20 | Dads & Father Figures ... come share your stories!, Sarah & Lonnie Morrison have a special announcement, and more!
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
48:09
September 6, 2021
See you in a few weeks!
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
01:35
July 26, 2021
19 | Zoey has been riding horses, Sarah & Sam talk IEP madness, and more!
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
01:05:31
July 12, 2021
18 | Growing our Rett Syndrome community, Elizabeth w/ @graceforrett shares stories, and more!
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
01:12:44
June 28, 2021
17 | Understanding parenting stress and trauma, Getting your first accessible vehicle w/ Tracey Hoyng, and more!
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
56:58
June 14, 2021
16 | Sam shares about his emotional growth, Meet Courtney Coleman of Frankie Says Fight Rett, and more!
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
01:08:10
May 31, 2021
15 | Exciting news from RettSyndrome.org, Samantha Brant shares about connecting with others, and more!
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
01:03:46
May 17, 2021
14 | Trying Hippotherapy w/ Zoey, Kourtney Barnum talks communication, and more!
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
01:14:47
May 3, 2021
13 | Traveling hacks, Doin' Disney Parks with a disability (feat. Lindsay Emery), and more!
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
01:11:39
April 19, 2021
12 | AmazonSmile makes us smile, Meet Finley, Caley, & Bryan Engnell, and more!
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
55:52
April 5, 2021
11 | New gene therapies to fight Rett Syndrome, Homeschooling Sierra w/ Elaine Moffatt, & more!
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
46:29
March 22, 2021
10 | Cure for Rett may be near, Kim Keane w/ Kindermusik, and more!
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
01:00:04
March 8, 2021
9 | Automate your life with Amazon & Google, Jill & Bailey Pratt w/ The Jiselle Lauren Foundation, and more!
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
43:53
February 22, 2021
8 | Special needs travelers, Rocky Mountain Rett Association, and more!
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
01:01:34
February 8, 2021
7 | Sharing your story, Meet Lori, Jim, & Hallie Schroath, and more!
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
01:18:55
January 25, 2021
6 | Dealing w/ the Diagnosis, Meet Jovie & Tracey Hoyng, and more!
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
01:05:40
January 11, 2021
5 | Zoey's 2021 Adventures, Kelly Melkus on special education, and more!
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
56:42
December 28, 2020
4 | Holiday hacks, Magnolia's Hope w/ the Teslers, and more!
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
01:03:58
December 14, 2020
3 | Smartify your home, Visiting a Rett clinic w/ Olivia & Naomi, & more!
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
01:04:13
November 30, 2020
2 | Holding Space, Meeting Kennedy & Misty Startup, & more!
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
54:54
November 16, 2020
1 | Our Story
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
38:47
November 2, 2020
Trailer
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
00:48
October 31, 2020