Talk Fragile X

We’re back with another episode of Talk FX! What better way to kick things off after a short break from our weekly episodes then to have Katie Clapp, President & Co-Founder of FRAXA Research Foundation join us! She shares with us the history of FRAXA, the motivation behind starting the foundation, how they choose Fragile X related research to fund, and much more!

It’s a new year, that means another Advocacy Day is upon us! We are excited about what 2021 holds for the Fragile X Community, and gaining more awareness and support for FX! Even though this year’s Advocacy Day will be virtual, we know it’s going to be just as impactful of a day, if not more! So on today’s episode, we go into details on what this year’s Advocacy Day is going to look like, why it’s so important to participate, and more!

In this weeks episode we’re joined with Debbie! She has a 13 year old son with Full-Mutation Fragile X and she shares with us her experiences with aggressive behavior & discipline as a Mother, and as a Paraeducator! We talk about the importance of patience and communication! As well as helpful resources like PEC’s if your child is non verbal. We also talk about physical approaches to relieving your FX Child of anxiety or hyperarousal. Such as a weighted blanket, a swing, or beanbag chair! We hope you are encouraged by today’s discussion!

In our first episode of 2021, I’m joined with Talk FX Podcast Team Member and FX Mom Kelsie! We wanted to start off the new year by talking about what Fragile X has taught us! We also talk about how to make the most of socializing our kids during this Pandemic, as well as successful and non-successful medications for things like anxiety and sleep aid! You don’t want to miss this encouraging episode!

In our last episode of Talk FX of 2020, we go over our top 5 most listened to episodes!! You don’t want to miss it! Thank you to each and every one of our listeners for your support since starting Talk FX in May of this year! This podcast wouldn’t be possible if it weren’t for you tuning in every week! We hope you’ve been encouraged by this podcast, and we look forward to continuing to encourage, and create more awareness of Fragile X in 2021! Happy Holidays and we’ll see you in the New Year!!

It’s our 20th episode of Talk FX and we’re joined with Amy, Mom to 10 Year old son Jaxon with Fragile X Syndrome! We talk about his diagnosis story, education, potty training, milestones, bullying, and more!! You don’t want to miss this episode!

In this weeks episode of Talk FX, we wanted to discuss a current topic that we’ve been seeing a lot of Fragile X Families needing some support with, and that’s navigating distance learning! Is your child currently participating in distance learning? Or are they doing half distance learning and half in person? Tune into this weeks episode as we chat with Debbie, Mom of Skyler with full-mutation FX! She shares with us what her son’s journey with distance learning has looked like, some encouragement for other parents, and some tips we hope will be helpful to our FX Community!

Jayne Dixon Weber is no stranger to the Fragile X Community! She has been a member of the National Fragile X Foundation since 2007! She has authored and edited multiple books on Fragile X. She is also a Mother to an adult son with Fragile X Syndrome. On this weeks episode of our Fragile X Author series, Jayne talks with us about what moved her to write her books on Fragile X, her experience as a mother to a son with FX, and her impactful work with NFXF! Don’t miss this amazing interview with the one and only Jayne Dixon Weber!

Cindi Rogers is the mother of two sons with Full-Mutation Fragile X Syndrome, ages 29 and 31. Jake, her oldest son was diagnosed in 1991, just days after her youngest son was born, at which time he was also diagnosed. After some years of grieving, she and her husband, with the help of many experts in the Fragile X field, found ways to create a manageable, productive, and relevant life as a family. It has been her personal mission to share these strategies in hopes of generating ideas that families can implement in their own lives, while living with Fragile X Syndrome. Thus her book Becoming Mrs. Rogers: Learning to Live the Fragile X Way was written! You don’t want to miss the incredible wisdom and encouragement that Cindi Rogers shares with us!

Elizabeth Griffin is the author of the book Fragile X Fragile Hope, and is the Mother of Zack, a 23 year old young man with Fragile X Syndrome. Learning that she was a Fragile X Carrier in her mid- 30’s helped her to understand a lot about herself and her responses to life. Parenting Zack and his older brother, who is a carrier, has made her a better person by the grace of God. You don’t want to miss this episode!