July is Disability Awareness Month in the United States and on this episode of the podcast we talk about different things you can do in your community and in your own home to participate. Finding ways to learn, share and grow bring us together as a community.

Speaking of bringing community together, our guest David and Melissa and working on just that! They are working with others in their community to bring change to their local parks.  Most parks are not actually accessible even when they are labeled accessible. Everyone should have the opportunity to play together at the playground and this amazing family is working to make sure their daughter and others are not left out.  We had so much to chat about with the Benay's that we had to break this interview into two parts. Make sure to come back in two weeks to hear the rest.

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

First up on the episode, we talk about three things you can do to start or improve the communication in your home with your Rett loved one.  From knowing what your individual's yes and no are to involving others in the conversation, communication is SO important.

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

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

Sam and Sarah have two kids in school with individualized education plans or IEPs.  IEPs are are basically a contract that the school will provide specific accommodations, tools, equipment to help your child to access their education.  With the school year coming to a close they have had several IEP meetings to update IEPs for the upcoming school year. To start the show today they share their top three tips for having a successful IEP meeting. 

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!

----------

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

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

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!

----------

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

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

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

On this week's episode we're shaking things up with Sarah and a guest host. First, Sarah shares about a couple upcoming events in the Rett and Disability community that she's excited for. Then, Megan Case, a returning guest to the podcast, joins Sarah to break down federal and state resources and where to find them in their and your areas.   

All the links they have to share are below: 

Federal Resources: 

Idaho Resources: 

Colorado Resources: 

To follow along with Megan Case and her family, you can follow her 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!

----------

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

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

Folks, I hope this song brightens your day as much as it has brightened mine. - Sam

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!

----------

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

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

The month of March was full of great news for the Rett Syndrome Community from the potential for federal funding in the United States to gene therapy for Rett given approval in Canada. You can find the news articles below.

On this week's episode we chat with the Dahms Family from Minnesota in the United States.  They share with us about their daughter Bennett as well as their involvement in the Midwest Rett Syndrome Foundation. 

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!

----------

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

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

Folks, I hope this song brightens your day as much as it has brightened mine. - Sam

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!

----------

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

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

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!

----------

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

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