Talk Fragile X

This month is Disability Employment Awareness Month! I'm SO passionate about this very topic! As an Employment Specialist who sees and experiences firsthand the challenges and difficulties of promoting inclusion in the workplace for our neurodiverse peers, I share my experiences, encouragement and support! Tune in and share with your friends, family members, educators and even your boss!

Fragile X Syndrome is the leading genetic cause of Autism. It's caused by a mutation of the FMR1 gene responsible for cognitive and behavioral development. Fragile X is often passed on unknowingly. The month of July is Fragile X Awareness Month! An opportunity to continue to spread more awareness of Fragile X, and celebrate the organizations like FRAXA Research Foundation and The National Fragile X Foundation and their efforts to support and find effective treatments for individuals living with Fragile X. It's also an important opportunity to spread awareness of Fragile X to those who may not have otherwise heard of it. In this week's episode, I talk about the importance of awareness month, as well as an EXCITING special announcement! Tune in to find out more!

I'm back! It's been several months since I've released a new episode. It's been a hard last couple of months for so many reasons. I shed some more light on this in the episode, and I hope you'll take a listen. Don't worry, I'm not missing Autism Awareness Month!!

It's crazy that we are in 2023 now! I had a great time off my podcast duties for the last month or so of December, and now I'm ready to get to work! What better way to kick off the new year with a rare vulnerable episode. I don't often share life updates, but this one in particular I felt was important. Tune in to hear more! 

If you caught the Friends reference in the title, big thumbs up to you! If not, it's okay, you're still welcome here! It's crazy to think this is our last episode of 2022, but we are here! I will be taking a break from the podcast world for the remainder of the year to spend time with family. I will also be taking this time to continue making plans for 2023. I'm excited for another year of growth, advocacy, and connecting with all of you in the Fragile X community. Be sure to tune into this week's episode. There's so much to talk about! Otherwise, see you next year!

In this week's episode, I talk about the importance of Disability Employment Awareness Month, and how it's an opportunity to talk about the transition for our neurodiverse peers from high school to competitive integrated employment. Which is one of the biggest changes our neurodiverse peers face! For many of our children, routine is an essential part of their day to day lives. As well as a consistent environment. Both of these consistencies change once they face adulthood. As well as the opportunity for our neurodiverse individuals to experience employment and all that it entails. As a CRP (Community Rehab Provider), I talk about the challenges and successes that come with fighting to create inclusive employment opportunities for neurodiverse individuals. I also talk about how providers, educators and even families can be a part of preparing them for successful employment. You don't want to miss this episode! Be sure to subscribe to Talk Fragile X Podcast and leave us a review & comment. We want to hear from you!

Happy September! On this weeks episode of Talk FX I share some life updates and the importance of encouraging our neurodiverse peers to expand their comfort zones, and how I've been able to see this first hand. Tune in and subscribe to Talk Fragile X Podcast!

Maintaining hope in our lives is a daily journey. Whether you're a parent of someone with Fragile X, self-advocate or full-mutation carrier. Often times the amount of hope we have is dependent on how our day is going, how our children are behaving, or discouragement in general. Not to mention our hope in having better treatments for our children affected by Fragile X, or even a cure! On this week's episode of Talk FX, I share from a raw and personal perspective of my own journey of maintaining hope and how it's been going lately. I also share what I've learned from other Fragile X families and experts that has really carried me through the difficult times. Tune in and share! 

This is an important episode that I hope each and every one of you will take the time to listen to! Please share with your friends, family and whoever else that you feel could benefit from hearing this message. Let's continue to create a more inclusive, understanding and supportive environment for our neurodiverse community! 

As we continue Fragile X Awareness Month, I think fear & anxiety as it relates to being a carrier of Fragile X Syndrome is so important to talk about and encourage one another in! It's not always easy for me to be open about the effects of Fragile X in my life, but I hope it will encourage even just one listener! Awareness is not just for a month, it's every day we wake up in the morning! Subscribe to Talk Fragile X Podcast and leave your review on Apple Podcast. 

This week's episode is a special one!! I'm sure so many of you have seen the news of the change in name of the FMR1 gene responsible for Fragile X Syndrome! This has been a long time coming! I'm looking forward to how this positive step forward creates a more appropriate and factual description of Fragile X Syndrome and moving away from the negative connotations. In this episode, I talk about the history of the FMR1 gene, why this is an important step forward as a female full-mutation carrier, and much more! You don't want to miss this episode!!!

It's Autism Awareness Month!! On this week's episode of Talk FX, we not only discuss the mission of Autism Awareness Month, but we also break down what Autism is and how individuals with Fragile X Syndrome are often co-diagnosed with Autism. I also share a bit of my 13-year-old cousin's journey of being diagnosed with both Autism and full-mutation Fragile X. You don't want to miss this episode!

On Tuesday, March 1st the National Fragile X Foundation will be having their annual Advocacy Day virtually! This is an opportunity for families affected by Fragile X Syndrome, caregivers, self-advocates, doctors, and researchers to meet with their members of congress and be an advocate for fragile x. Whether that's sharing your fragile x diagnosis story or advocating for continued funding in research! It's an empowering opportunity to be a part of the fragile x community! On today's episode we also talk about the other important aspects of advocacy! We hope you leave this episode feeling encouraged as a self-advocate, full-mutation carrier, or parent of a child with fragile x!

What better way to start off the new year then kicking off Season 5 of Talk FX with a very personal episode! I'm excited to have my husband Moe on with me for the first time ever! We talk about my diagnosis story, how fragile x has affected our relationship, the hardships, and more. In the countless episodes of Talk FX that I've done, I have had yet to get more personal or vulnerable. However, last year I was so encouraged and inspired by the many families that boldly and courageously shared their FX diagnosis stories with me on Talk FX, that I've decided to do the same, with the help and support of my husband. You don't want to miss this episode! 

Cheers to our very last episode of 2021!! I've had many conversations with Fragile X families in the last few months regarding a topic that is so important. I've also seen so many families reaching out for support on this topic as well. That is on preparing our children for doctor's appointments! There are so many factors that come into play in preparing our children for doctor's appointments. I hope that the encouragement we offer is helpful to our fragile x community in supporting your child in the best way possible! You don't want to miss this episode! 

In this episode of Talk FX, we dive deeper into the important topic of transitioning from grade school to adulthood for our FXer's! Where do I start? What questions do I ask? What services are available in my state? Whether you're a newly diagnosed family, self advocate, full-mutation carrier, or you just stumbled upon this podcast, you don't want to miss this episode!