Talk Fragile X

On this weeks episode of Talk FX, I’m joined with President & Co-Founder of FRAXA Research Foundation, Katie Clapp! As well as the Community Services Director, Holly Roos! We chat about all things World Fragile X Day 2022, research, the re- naming of the FMR1 gene responsible for Fragile X, and more!

In this weeks episode I’m joined with Author, Kirsten Fowler! Mother of four children, with three having Full-Mutation Fragile X Syndrome. Kirsten shares about her vulnerability and inspiration behind writing her book, what it’s like being a mother to three children with fragile x, and much more!

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!!!

Surprise!!! On this weeks episode of Talk FX, I had the pleasure of chatting with Author, Blogger, and Mother of 4 children, Kate Swenson! Kate was recently on the Today Show promoting her new book and sharing a snippet of her and her son Cooper’s story! Since then, her new book has become a Best Seller on Amazon!! When she agreed to be a guest on Talk FX, I about jumped out of my chair! It was such a pleasure to welcome Kate on the podcast and talk about her journey in writing Forever Boy, her blog Finding Cooper’s Voice, and learning more about her and her sweet family. You don’t want to miss this special episode!! Links to buy her new book and to follow her on social media are all on our website and Instagram @talkfragilex!

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 this weeks episode of Talk FX, I’m joined with Sara Knudson, a passionate mom of three children, with two of the three being affected by Fragile X Syndrome. Sara shares about her children’s diagnosis stories, the struggles, the joys, and the amazing resources and support they have available in their home state of Illinois! It was such a pleasure to have Sara on Talk FX! You don’t want to miss this episode!

Prioritizing self-care is not always simple! Whether you're a mom of a fragile x child, self-advocate, or full-mutation carrier, it can be challenging to find time for yourself to be alone or do what helps you to reset or re-energize! In this week's episode of Talk FX, we discuss not only the importance of prioritizing self-care in your life, but also the different forms of self-care to consider implementing into your daily, weekly, or monthly life. 

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!

If you're reading the title of this episode and you're thinking "this doesn't pertain to us yet, think again!" In this week's episode of Talk FX, we discuss what it looks like to prepare our children for employment. We understand that there is a pretty big spectrum of families in the Fragile X community with children that have either had employment experience, volunteer experience only, or maybe even hasn't had a job before! Well, we are not only going to discuss what the employment process can often look like for individuals with developmental delays, but we are also going to specifically focus on preparing our Fragile X children for navigating the general public as it pertains to employment. I share a recent story about a developmentally delayed employee's experience interaction with a negative customer and how this was a reminder that not every individual knows how to interact with someone with developmental delays! This is a topic that I'm incredibly passionate about and can't wait for you to listen! I also discuss the importance in inclusivity within the employment world! 

On this weeks episode of Talk FX, it was so special to welcome my Aunt Michelle and Uncle Jeff, and my cousin Nathan for a raw family conversation about Fragile X Syndrome. We discussed the education system, advocacy, fragile x experts, supports and much more. I’m so thankful for my family and their willingness to join me on Talk FX. We hope this episode brings you encouragement and hope for your family.