Talk Fragile X

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Talk Fragile X

Talk Fragile X Podcast exists to educate others about Fragile X Syndrome!
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01/07/2024

New Episode is LIVE!! It’s also Fragile X Awareness Month!! 💙💙

Available on Spotify or Apple Podcast!

31/05/2024

As promised, I’m back with a NEW episode of Talk Fragile X Podcast! 🎉 This is my first episode back in 2024 so please go give it a listen anywhere you listen to your podcasts, including Apple Podcast & Spotify!💙

15/11/2023

Join us as we host four professionals, as they showcase the effectiveness of having a multidisciplinary team and the ways various professionals collaborate.

06/11/2023

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! I talk about how you can get involved from a community and legislative standpoint. Take a listen anywhere you listen to podcasts! ❤️

12/10/2023

New Episode of Talk Fragile X is out NOW!! 🙌🏻
In continuing our efforts to spread awareness of Disability Employment Awareness Month, I had the pleasure of speaking with Rob Snow, Director of CEO Commission for Disability Employment. Rob is such a mission driven and kind individual and I’m grateful for the work he does with CEO Commission!

https://spotify.link/bXFkODb3PDb
Available to listen on Spotify, Apple podcast or Google Podcast!

05/10/2023

Disability Employment Awareness Month is a topic that I’m so passionate about! As an Employment Specialist who sees and experiences firsthand the challenges 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, educators and even your boss! 🙌🏻
🎙️ Listen on Spotify, Apple Podcast or Google Podcast!

12/08/2023

🎉 New Episode 🎉

I had the pleasure of welcoming Katie Clapp & Holly Roos from FRAXA Research Foundation on this weeks episode of Talk Fragile X!! We talk World Fragile X Day 2023 and some exciting research updates!
🎙️Listen on Spotify, Apple Podcast or wherever you listen to your podcasts!
Go to fraxa.org to learn more! 💙

30/06/2023

Fragile X Awareness Month & A Surprise Announcement!! 🥰❤️👀

https://open.spotify.com/episode/41KxPI4XirAYFqMhIS15sd?si=qqTnzSmoQcO_--SD-iOhmQ

12/04/2023

So excited to be back for a new episode of Talk Fragile X! ✨

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! ❤️

https://open.spotify.com/episode/2Fs6i7nXlsXkuIp1Fz6iAY?si=hSnwC3IHSN-OEyULhqHgyQ&dd=1

19/01/2023

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… and hard. Tune in to hear more! ❤️
Episodes of Talk Fragile X are available on all major podcast listening platforms!

14/12/2022

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, including Advocacy Day, so don’t miss it! Otherwise, see you next year! ❤️
Link to Register for Advocacy Day is on our website https://coliegirl18.wixsite.com/talkfragilex 🙌🏻

26/10/2022

When I woke up this morning, I was in tears of joy to find out Talk Fragile X Podcast has now reached 10K listeners!! I’ve been working towards this goal for some time now, and I couldn’t have done it without ALL of YOU! To know that this podcast is impacting families and hopefully spreading awareness of Fragile X Syndrome along the way, makes me emotional. With every advocate, the impact on our neurodiverse community’s lives is enormous. THANK YOU!! 💙

26/10/2022

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 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 obtain 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 on Spotify or Apple Podcast. We want to hear from you! 💙

https://open.spotify.com/episode/4Ie7u192FBLXaNKJUALfFe?si=oxyOrf-kQDGeXZWlq-l7uw

14/10/2022

Something that doesn’t seem to be talked about enough is the journey of finding the right therapists for our neurodiverse 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! It was a pleasure to catch up with Ashley and her fam! ❤️
New Episode available on all major podcast listening platforms!!

19/09/2022

Hi 👋🏻 I’m Nicole! If you’re a new follower, WELCOME! Thank you so much for supporting me on my journey of creating more awareness & advocacy for Fragile X Syndrome. 🤍 Here are a few facts about me:
• I’m a female full-mutation carrier of Fragile X.
• My 15 year old cousin Nathan is a full-mutation carrier and is my daily inspiration.
• My full-time job is an employment consultant for individuals with physical and developmental delays in obtaining paid employment, and fighting for inclusion in the workplace.
• I started Talk Fragile X Podcast just over 2 years ago now, reaching over 9,500 listeners and working towards my goal of 10K!!
• I dedicate at least 20 hours a week to my podcast, advocacy and connecting with others in the Fragile X community!
• In my spare time I enjoy home decor! 😍 I love to express my creativity through making my home a welcoming atmosphere for friends & family.
• I’m a firm believer that bacon does not belong on donuts. 🤷🏻‍♀️
• I love to connect with other families in the fragile x community and offer my platform for others to share their stories and experiences with Fragile X.
📸:

09/09/2022

New Episode is out now!! 🙌🏻
In this weeks episode of Talk FX, I share some life updates! It’s not always easy for me to be vulnerable on this podcast. But it’s the families I’ve had the pleasure of meeting, and their bravery in sharing their stories and experiences with Fragile X that encourages me everyday. 💙
Link to our new Etsy shop: https://www.etsy.com/shop/TalkFragileX?load_webview=1&bid=5lO19aZxJPSLuPOS7BX1avf9xL7g
New Episode: https://open.spotify.com/episode/1HxTw97B1qQ2uwJ9w9IFef?si=DG7kbIgkRoiZ2FsdX5o4ww

09/09/2022

My model husband helping me promote new podcast merch!! 😍😍

3X3 & 4X4 Talk Fragile X Podcast Removable Stickers available on Etsy!! All proceeds will go towards nonprofit organizations focusing their efforts in better treatment, supports and research for our loved ones affected by Fragile X Syndrome!! 💙💙
It’s also an opportunity to support me in my continued efforts of creating more awareness of Fragile X. A mission I’m incredibly passionate about!
Link to Etsy Shop: https://www.etsy.com/shop/TalkFragileX

29/08/2022

This one made me tear up. Thank you so much. 💙 If you want to leave a review for Talk Fragile X, I’d love to hear from you on Apple Podcast!

22/08/2022

About a year ago, I had the pleasure of meeting Andrea Miller 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!
Available on all major podcast listening platforms including Spotify and Apple Podcast!

15/08/2022

A raw and emotional one! Please listen, share, and keep on advocating. 💙

Available on all major podcast listening platforms including Spotify: https://open.spotify.com/episode/16soqFt0ozIdUHz9iJ206p?si=qLrDHsCgQROKmuoZZduWoQ

10/08/2022

Maintaining hope in our lives is a daily journey. Hope for better treatment for our children, hope for a cure for Fragile X, hope that our children will one day obtain paid employment. The list goes on! On this weeks 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!!
Episodes of Talk Fragile X are available on Apple Podcast, Spotify and Amazon Music!

02/08/2022

Did you know we have Talk Fragile X Podcast stickers?? 🙌🏻
Available Here: https://www.etsy.com/shop/TalkFragileX
Proceeds go towards a new nonprofit organization every month that focuses on creating a more inclusive, educative and supportive environment for our neurodiverse peers! As well as organizations focusing research efforts on Fragile X Syndrome!

01/08/2022

The first ever Talk Fragile X Podcast Swag is now available!! 🎉🎉💙💙
All proceeds will go towards organizations each month that are focusing their efforts on creating a more inclusive community for our neurodiverse peers! As well as continuing research efforts on Fragile X that can help families better support their children affected by FX! Thank you for your continued support of Talk Fragile X Podcast as well!
Link to purchase & support: https://www.etsy.com/shop/TalkFragileX

28/07/2022

I had the pleasure of welcoming Stephanie Hanrahan (Tinkles Her Pants )on an episode of Talk Fragile X!! 🎉She’s the mother of two children with Autism, blogger of Tinkles Her Pants website, and the founder of the 501(c)3 non-profit Labeled & Loved, which provides respite and resources for caregivers of children with disabilities. She’s also the host of Labeled & Loved Podcast!
It was very evident from the start that Stephanie is an open book about her story and where she started, verses where she is now! Stephanie is raw, encouraging and full of wisdom. You can check out her blog at tinklesherpants.com as well as her non-profit organization labeled and loved.org! 🙌🏻
This weeks episode is available on all major podcast listening platforms including Apple Podcast, Spotify & Amazon Music!! You don’t want to miss it!

23/07/2022

💚💚💙💙 Thank You Seattle Mariners

15/07/2022

Happy FriYAY! 🙌🏻
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 like myself, and is one of the most kind and genuine individuals that I’m so blessed to have met! When I was thinking about how I wanted to creat Part 2 of Fear & Anxiety episode, I immediately sent Kirsten a message to see if she would be willing to join me for this episode to talk about fear & anxiety not only from a carrier perspective, but also from her three childrens perspectives as well. Kirsten has such valuable information and experiences to share, so tune in and we hope every listener is encouraged!
Available on all major podcast listening platforms including Apple Podcast, Google Podcast & Spotify!

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https://coliegirl18.wixsite.com/talkfragilex

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Fragile X Awareness Month 2022!

In preparation for Fragile X Awareness Month, I asked the Fragile X Community what FX Awareness Month means to them! 💙 . . Fragile X Awareness Month is about coming together to create more awareness, advocacy and support for FX! It’s also an opportunity to support the research being done for finding a cure for FX, talking with your legislators and informing educators! . . Advocacy is not just for a month, it’s each day we wake up in the morning! You don’t have to be affected by Fragile X to be an advocate for those who are. 💙 . . Talk Fragile X Podcast is available on all major podcast listening platforms! . . Go to Fragilex.org to learn more! . . . . . . #fragilexawarenessmonth #fragilex #fragilexsyndrome #fragilexawareness #fragilexcarrier #fragilexfacts #nfxf #nfxfconference #awareness #advocacy #support #community #educate #research #talkfragilex #podcastersofinstagram #fragilexresearch

Talk Fragile X

I’ve been passionate about advocacy ever since my cousin Nathan was diagnosed with Fragile X at only 2 1/2 years old. I’m also a self-advocate as a full-mutation fragile x female carrier. Without advocacy, we would not be where we are today with the resources and supports available to the Fragile X community! . . On todays episode of Talk FX, I talk about the upcoming Advocacy Day on March 1st, training day, what it means to be an advocate for fragile x, and much more! . . Talk Fragile X is available on all major podcast streaming platforms! . . https://open.spotify.com/episode/2qrUEOZgZTh3E8E01kp7bT?si=2_B4QQW8TvuXGL0zfPIfKw . . . . . . #fragilexsyndrome #fragilex #fragilexawareness #fragilexcarrier #fragilexfacts #fragilexresearch #advocate #awareness #support #community #educate #talkfragilex #podcast #newepisode #spotify #applepodcast #amazonmusic #podcastersofinstagram

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