Shows
pRETTy happy. | Hope & Rett syndrome50 | We are thankful for..., Looking back at our most memorable episodes, and more!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...2022-11-281h 18
pRETTy happy. | Hope & Rett syndrome17 | 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...2021-06-1456 minpRETTy happy. | Hope & Rett syndrome6 | 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!
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Remarkable: Life with Rett SyndromeKati Gray & Kendall (USA) – Creating JoyKati's daughter Kendall is 4 and is living with Rett Syndrome.
This was my first talk with another Rett Syndrome family for the Remarkable podcast and I knew that I was about to learn so much from the other families with the same diagnosis as we have.
It's my joy to introduce you to their family today.
To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.
GET IN TOUCH!
Let me know what you think about the Rem...2019-10-2849 min
Remarkable: Life with Rett SyndromeCaroline Dempster-Fitzpatrick & Charlotte (AUS) – Parenting, Divorce & Rett (Part 1)Caroline and I have actually known each other for a few years but this was the time first we sat down to talk about how Rett Syndrome has effected her daughter Charlotte and how her divorce has changed their family dynamics.
This is Part 1 of our talk - I didn't want to edit out anything as we both felt that someone in the same position as Caroline would benefit from hearing what she had to say.
To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast....2019-10-241h 19
Remarkable: Life with Rett SyndromeCaroline Dempster-Fitzpatrick & Charlotte (AUS) – Parenting, Divorce & Rett (Part 2)This is Part 2 of my talk with Caroline.
I know it took alot of courage to say what Caroline has said - but we know that there are other families out there going through the same challenges and the advice and encouragement from Caroline is so powerful.
Thank you again to Caroline for sharing your story.
To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.
GET IN TOUCH!
Let me know what you think about the Rem...2019-10-2437 min
Remarkable: Life with Rett SyndromeJodi Amiri & Avery (USA) – Rollercoasters & RettJodi's 7 year old daughter Avery has Rett Syndrome, but that was not her first diagnosis.
After talking with many families, it was apparent that alot of us experience receiving an Autism diagnosis before we reach the correct diagnosis of Rett.
I loved hearing about how funny and fun Avery is and I loved hearing about what inspires Jodi to do more for Avery despite Rett Syndrome.
To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.
GET IN TOUCH!...2019-10-2159 min
Remarkable: Life with Rett SyndromeCora Foster & Olivia and Charlotte (USA) – Twinning with Rett SyndromeCora's 4 year old twins Charlie and Olivia both have Rett Syndrome.
Cora keeps an amazing account of their Rett Syndrome journey on their Instagram and it was great to sit down and have a talk about how Rett effects both girls. We also talked a bit about mental health and mindset, and how the girls are with their new baby sister Madeline.
To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.
GET IN TOUCH!
Let me know what yo...2019-10-1751 min
Remarkable: Life with Rett SyndromeJo Huxley & Megan (AUS) – Life With A Late DiagnosisJo's Rett Syndrome story is a little different to what we're typically used to hearing - her daughter Megan is currently 15 and wasn't diagnosed until she was 12, just 3 years ago.
We had a great talk about how a later diagnosis of Rett Syndrome has effected them, and how Megan is doing today.
To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.
GET IN TOUCH!
Let me know what you think about the Remarkable podcast and these amazing Rett Sy...2019-10-141h 02
Remarkable: Life with Rett SyndromeJustine Aubuchon & William (USA) – Warrior WilliamJustine's 2 year old son William has Rett Syndrome - yes boys can have Rett Syndrome too!
It was such a great opportunity to sit down with Justine and talk about her William, how Rett Syndrome has effected him and how they have dealt with getting such a rare diagnosis.
To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.
GET IN TOUCH!
Let me know what you think about the Remarkable podcast and these amazing Rett Syndrome families.
F...2019-10-1023 min
Remarkable: Life with Rett SyndromeMel Lancaster & Katelin (USA) – Trails to a Texas Trial and beyond (Part 2)Part 2 of my chat with Mel for the Remarkable podcast.
Again, we had such a great time chatting about everything they've experienced with Rett Syndrome. I didn't know much about clinical trials for Rett Syndrome beforehand, so I'm so glad to have spent the time with Mel and soak in the knowledge she has.
Please remember to check out her blog for more info about their lives with Rett, and check out some of the links below if you're interested in the clinical trials available where you are.
To find out more about thi...2019-10-0732 min
Remarkable: Life with Rett SyndromeMel Lancaster & Katelin (USA) – Trails to a Texas Trial and beyond (Part 1)Mel's daughter Katelin is 26 and living with Rett Syndrome.
It was such an honour to sit down with Mel not only once, but twice, for the podcast. I openly admit that I have alot of learning to do, so talking with Mel was such a great learning experience for me.
We talk about a range of things - from her writing, to Atypical Rett Syndrome, to the clinical trials they were involved in. Mel's blog Trail to a Texas Trial is an amazing recount of everything they've experienced with Rett Syndrome and with the Trofinetide tr...2019-10-0751 min
Remarkable: Life with Rett SyndromeDana Beckett & Maika (AUS) – One Day At A TimeDana is the wonderful mum to 6 year old Maika, who is living with Rett Syndrome. In this episode, we talked about what it's been like since their diagnosis, how it's effected her twin brother Marley and having another baby after a Rett Syndrome diagnosis.
To find out more about this episode and links to the topics we discussed, please visit http://teamjovie.com/podcast.
GET IN TOUCH!
Let me know what you think about the Remarkable podcast and these amazing Rett Syndrome families.
FACEBOOK https://www.facebook.com/re...2019-10-0345 min
Remarkable: Life with Rett SyndromeNaomi Carlise & Olivia (USA) – Settling Into A New DiagnosisNaomi is the mum to the beautiful 2 year old Olivia, who was diagnosed with Rett Syndrome in May 2019. It was a great pleasure to talk with Naomi about how they are managing life with a new diagnosis of Rett Syndrome.
Naomi had an amazing amount of info to share with you all!
To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.
GET IN TOUCH!
Let me know what you think about the Remarkable podcast and these amazing Rett Sy...2019-09-3052 min
Remarkable: Life with Rett SyndromeWelcome to Rett SyndromeHappy Rett Syndrome Awareness Month 2019!
I am so proud to introduce you to some Remarkable Rett Syndrome families during October 2019 - it's been such a great learning experience for me and I know their stories will bring you some inspiration and comfort, especially if you are a Rett Syndrome family also.
Just to quickly introduce myself - my name is Tracey and my 10 year old daughter Jovie has Rett Syndrome.
In this episode, I wanted to briefly describe what Rett Syndrome is and where you can go for more professional information and support. If...2019-09-3009 minRemarkable: Life with Rett SyndromeWelcome to Remarkable!Welcome to Remarkable - a podcast about the families all over the world, who love someone with Rett Syndrome.
Rett Syndrome is a rare neurodevelopmental, genetic disorder that is caused by mutations on the X chromosome on a gene called MECP2. It causes problems in brain function, and that in turn effects every part of the body - from breathing, to walking, talking, digestion and beyong. There is no current cure for Rett Syndrome.
I will be working with some amazing Rett Syndrome families to bring you the rest of the podcast series closer to Oc...2019-08-0602 min