Talk Fragile X: Recent Episodes
Talk Fragile X
Talk Fragile X Podcast exists to provide a platform for families and Fragile X experts to share their knowledge, resources, and experiences, all in the hopes of creating more awareness, advocacy, and support of Fragile X Syndrome! Even if you don’t know what Fragile X Syndrome is, this Podcast is still for you! We want everyone to know what Fragile X is and understand it’s genetic prevalence in individuals lives.
During Fragile X Awareness Month there’s lots in store, including an update on my family and I’s journey with Fragile X!
It’s Fragile X Awareness Month! As we kick off this important month, Talk Fragile X has an important announcement!
It’s great to be back on Talk Fragile X Podcast! I share some updates to our Fragile X journey, what you can expect from the podcast this year, and more!
October got away from me, but I still wanted to share this important episode with you all! After all, Disability Employment Awareness shouldn’t just be focused on for one month out of the year, but rather every day! It’s an ongoing effort that needs our support!
The CEO Commission for Disability Employment was created to increase opportunities for individuals with disabilities to obtain and/or maintain employment. The CEO Commission for Disability Employment focuses on three main goals: Policy, Practice and Culture! Tune in to learn more about CEO Commissions purpose, current focuses, and what Disability Employment Awareness Month means to them! You don’t want to miss this opportunity to hear from such a kind and mission driven Director, Rob Snow!
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!
I had the pleasure of welcoming Katie Clapp and Holly Roos from FRAXA Research Foundation on this weeks episode of Talk Fragile X! Katie and Holly talked all things World Fragile X Day 2023, as well as FRAXA’s significant research advancements that have been made this year, and what they look forward to in 2024. You don’t want to miss this episode!
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!
Something that doesn’t seem to be talked about enough is the journey of finding the right therapists for our special needs children! For so many families, this can be a very challenging and emotional process. Ashley shares her journey of finding the right therapists for her full-mutation Fragile X son, Sebastian. She shares her emotional journey, as well as encouragement of important characteristics to look for in a therapist! She also shares a powerful reminder of why momma’s know their kiddo’s best!
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!
About a year ago, I had the pleasure of meeting Andrea when she reached out to me on social media one day. We ended up connecting on a phone call and talked about life, family, faith, and of course Fragile X for over an hour! Since then, we talked about continuing our conversations on a future podcast episode. However, life got busy for both of us, and Andrea and her husband welcomed a precious baby girl to their now family of 5. The timing of us getting together to do this episode could not have been better! I’m so grateful for Andrea and her amazing perspective she shares as a mom of three, with one whom has full-mutation Fragile X Syndrome. You don’t want to miss this episode!
This is an important episode that I hope you will listen to, share, and be encouraged by. I also hope that you will hear my heart in why we have work to do to continue to work towards a more inclusive environment for our neurodiverse peers!
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!
Stephanie Hanrahan was just your seemingly average housewife until she grew tired of pretending and decided to make her private journal public. Since sharing her story, Stephanie has achieved viral success with her website Tinkles Her Pants, which chronicles her journey as a wife to a husband with chronic illness, mother to two children with Autism, and a woman who often unravels then finds her footing again. She can be found sharing nothing but the truth on the Today Show, CNN, Yahoo! News, The Daily Mail, and most recently her TED Talk: The problem with being perfect. Stephanie is also the founder of the 501(c)3 non-profit Labeled & Loved, which provides respite and resources for caregivers of children with disabilities, as well as the host of Labeled & Loved Podcast.
I can’t say enough about Kirsten Fowler! She’s a mother to three children with full-mutation Fragile X, is a female Full-Mutation carrier just like myself, and is overall just one of the most kind and genuine individuals that I’m so blessed to have met! When thinking about how I wanted to create part 2 of the Fear & Anxiety episode, I immediately sent Kirsten a message asking if she would be willing to join me in talking about fear and anxiety not only from a carrier perspective, but also from her three kids perspectives as well. Fear and anxiety are not easy challenges to talk about, especially as it pertains to fragile x. I’m so grateful for Kirsten’s willingness to join me in this conversation! She has so much valuable information and experiences to share, so tune in and we hope each and every listener is encouraged!
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.
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! Share Talk Fragile X podcast with your friends, family, educators, neighbors, etc.! Help us make this an impactful awareness month of 2022!!
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.
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, 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!
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 shared on enough!
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 because of her efforts! You don’t want to miss this episode!
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 don’t want to miss this episode!
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 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!
On this weeks episode of Talk FX, we’re joined with Ashley, mom of her 2 year old son Sebastian who has full- mutation Fragile X. She shares the process of receiving the FX diagnosis and all the emotions that come with it. Ashley also shares how important it is to be an advocate for Fragile X, and what that looks like. You don’t want to miss this LAST episode of our series Fragile X Diagnosis Stories! It is so important to have support as a newly diagnosed FX family!
On this weeks episode of Talk FX, we continue with episode 3 of our serious “Fragile X Diagnosis Stories.” We have the pleasure of talking with Katie, Mom of Quinton who was diagnosed with Fragile X at 16 months old. Katie learned about FX when she was pregnant with Quinton. She found out her sisters were premutation carriers during that time. It was definitely a shock for her and her family, but Katie’s outlook is inspiring! We know it will be inspiring for the FX community as well!
In this week’s episode of Talk FX, we’re joined with Ashley, who has a 19 month old boy named Austin with the full-mutation Fragile X Syndrome. She shares with us her sons unique diagnosis journey that started at only 1 month old.
In this weeks episode of Talk FX, we are joined with special guest Erika Vasquez who shares with us her FX diagnosis journeys for her son and daughter! She also shares her perspective on the upcoming school year and the important decision on virtual education vs. in-person education for children with Fragile X!
In this weeks episode, we welcome back the FRAXA Research Foundation! We talk with Elle Skala, creator of The Step Up for Fragile X Virtual Event for Fragile X Awareness Day! She discusses the purpose of the event, how YOU can get involved, and much more!
In this weeks episode of Talk FX, we’re joined with Wendy and Debbie, Both Mom’s of boys with Fragile X Syndrome. They get real about the journey of potty training children with FX! The successful and non-successful approaches, and recognizing that every child’s journey is different! Wendy and Debbie also share their children’s life skills strengths and their capabilities of being independent! July is Fragile X Awareness Month!
In this weeks episode of Talk Fragile X, Mom’s of Children with FX, Kelsie and Debbie share the importance of Fragile X Awareness month, and ways to create more awareness of FX even during these current times of social distancing! We also talk about how the NFXF International FX Conference has been impactful so far, and the importance of utilizing these virtual series as resources - whether you’re a newly diagnosed FX family, self-advocate, sibling of a child with FX, or a full-mutation carrier!
In this weeks episode of Talk Fragile X, Priscilla shares her journey of finding out her Fragile X Carrier status, and how her and her husband decided to use IVF (In Vitro Fertilization) in their journey of having children. This is a procedure that is used to aid in fertility or prevent genetic complications. As well as to assist in the conception of a child.
In this weeks episode of Talk FX, we have the pleasure of talking with Samantha and Paul, parents of their 18 month old son who was diagnosed with Fragile X Syndrome just 2 months ago! We are excited for you to be encouraged by their perspectives on this new journey of theirs, and the way they advocate for their son on a daily basis. This episode can be especially encouraging for other families who have received a new diagnosis.
We had the privilege of getting to know all about AMP (Autism Movement Project) Sports & Fitness! They’re an organization that works with kids and adults with developmental delays (such as Autism, Fragile X Syndrome, Down Syndrome, etc.) We talk about their mission, success stories, envisions for AMP, the importance of inclusion for special needs individuals, and much more!
In this weeks episode, we talk with David Bjork, Director of Community Relations at FRAXA Research Foundation. He shares on the background of FRAXA, where they were at when they started, and where they are today with FX clinical trials and their efforts to find a cure for Fragile X Syndrome!
When you find out the news that you’re a Fragile X Carrier, it is often a difficult time, especially for those that may not have even heard of FX before! Well you’re not alone! In this weeks episode of Talk FX, Nicole shares her journey of how Fragile X has affected her life, and how she has used her story to create more advocacy and awareness of FX in her community!
When families receive the diagnosis that their child has Fragile X Syndrome, you often hear “Fragile What??” In this episode, Michelle and Kaitlyn, both Mom’s of Fragile X Children, share their inspiring FX diagnosis stories!
In this weeks episode, 14 year old Annabelle answers questions on what it’s like being the sibling of a Fragile X Child. As well as how important it is to her to be an advocate for her younger brother who has the full mutation of Fragile X Syndrome.
Thank you for tuning into our very first episode of Talk FX! In this episode you will hear about how Talk FX was formed, our mission & purpose, and what you can expect in episodes to come! We are excited to connect with fragile x families in the NW Region and be able to share our resources, encouragement, our individual Fragile X stories, and more! Look out for our next episode regarding important topics on Fragile X Syndrome coming soon!