A Mama’s Xtra Love

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! Subs...

Fragile X Awareness Month is here! For the whole month of July, we are going to be releasing weekly episodes in effort to be a part of supporting, educating and creating more awareness of Fragile X Syndrome! I'm so excited to kick off awareness month joined with my husband Moe! We talk about what it means to be an advocate, female full-mutation carrier, National Fragile X Conference, and much more...

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...

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 su...

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 t...

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 i...

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 resea...

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 e...

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...

Joining us for our second episode of 2022 is President & Co Founder of FRAXA Research Foundation; Katie Clapp! She shares with us the exciting research proposals coming up for FRAXA to support, the 2nd annual World Fragile X Day on July 22nd, 2022 and how you can be involved, and much more!

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, las...

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 h...

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!

On Tuesday, November 30th it’s National Fragile X Foundation’s Giving Tuesday! We discuss how this annual day of giving is an amazing opportunity to make a difference in the lives of families affected by Fragile X Syndrome. Tune into this weeks episode to learn how you can be apart of Giving Tuesday!

On this weeks episode of Talk FX, we focus on one of the most impactful aspects of Fragile X Syndrome, and that’s Advocacy! With Advocacy Day a few months away, it’s important to start thinking about how you can participate! But that’s not all, we can be apart of advocacy in other ways as well that make a difference in the lives of individuals with FX. Tune in to find out what those are!

What does the transition from grade school to adulthood look like for your FX child? In this weeks episode, we talk about what challenges are involved in this particular transition in an individual with FX’s life, and the supports that are available! It is so vital to provide these resources, and ensure the best transition possible for our children! This is a topic that can’t be discussed and shar...

In this weeks episode of Talk FX, we are joined with a very special guest, Dr. Randi Hagerman! She is a distinguished professor of Pediatrics at the University of CA Davis Medical Center, and is the director of the Fragile X Research and Treatment Center at the MIND Institute. It doesn’t end there! Randi Hagerman has made, and continues to make a significant impact in the fragile x community becau...

We’re excited to be back with a new episode of Talk FX, after taking a pause. What better way to kick things off then to have special guest Katie Clapp, Founder of FRAXA Research Foundation on with us to share about the launch of World Fragile X Day. She shares how this idea came about, how others can get involved, and how other organizations across the nation have joined World Fragile X Day. You...

In this weeks episode, we chat with our Instagram Giveaway winner Brandy! Her and her husband have two boys (ages 3 & 6) with Fragile X. She shares how they navigate life, how much support they’ve found in their tight nit community, and talk about what being a Fragile X Parent is all about - the joys and the struggles!

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...

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 you...