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The MiaThrives Podcast

The MiaThrives Podcast

By MiaThrives

Join Melissa and Emily from MiaThrives as they discuss thriving with EB, Butterfly Children, our amazing community and everything in between! We are so excited to connect with you!

Support our podcast at www.patreon.com/miathrives
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Currently playing episode

Not Letting EB Dictate Her Life

The MiaThrives Podcast Feb 17, 2023

00:00
26:09
Not Letting EB Dictate Her Life

Not Letting EB Dictate Her Life

Through self confidence and self acceptance Noelle didn't let EB stand in her way of attending an exchange program half way around the world. She is passionate about dance, her double major in University and spending time with her friends in the EB community. After tuning into her episode don't forget to head over to our Facebook forum where the conversation continues! 

Instagram- https://www.instagram.com/noelle_hermes/

TikTok- https://www.tiktok.com/@noellehermes?refer=embed


Feb 17, 202326:09
PinkPoshFox
Jan 27, 202337:14
"I have EB, but EB doesn't have me"

"I have EB, but EB doesn't have me"

Amy is a UK-based mama, wife, advocate, and pilates enthusiast with an extremely positive outlook on life. Tune in to this episode where she shares her journey with pregnancy, breastfeeding, and life post-partum. Amy chooses to focus on the aspects of motherhood she can do like reading to her son daily instead of dwelling on some physical aspects that are out of her control. 

Jan 20, 202357:55
"He was meant to be here, even if he wasn't expected to be here."

"He was meant to be here, even if he wasn't expected to be here."

Moe spent the first two years of his life in the hospital because they didn't expect him to make it, not only did he make it but he is Thriving! He has a unique career giving back to the community and has evolved into being a social butterfly. 

Jan 13, 202349:31
"She was dancing in the womb"

"She was dancing in the womb"

Vanessa has a deep love for music that has helped her cope with dressing changes and the pains of EB. She has merged that love of music with her other passions to create her dream career, despite people telling her it wasn't possible she pushed on to achieve her dreams.

Jan 06, 202358:05
Not just surviving but Thriving!

Not just surviving but Thriving!

When Armando first went into foster care adoption wasn't on the table since they didn't know what his life was going to look like with EB and if he would even survive, he is not only surviving but THRIVING with a very full life including a career, family (families), girlfriend and adorable dog! Tune in to hear his amazing journey and unique story. 

Dec 16, 202201:01:44
"Dating someone with EB is a roller coaster, I normally don't like roller coasters but this is the best ride ever."

"Dating someone with EB is a roller coaster, I normally don't like roller coasters but this is the best ride ever."

Sarah believes her gift is the ability to help others, she chats about how she has been able to accomplish this within her career and loving relationship. She is a little travel bug, cook, dog mom and so much more, you don't want to miss this fun-filled episode! 

@sarahgracechunk

Dec 09, 202247:19
Accepting and Loving yourself for who you are first!

Accepting and Loving yourself for who you are first!

Jamie joins Emily on another Episode of the MiaThrives Podcast chatting about, traveling the world with the love of her life, her unique career that lends well to EB care, and her positive attitude toward's self-love! 

Dec 02, 202233:06
He Was Here For A Reason

He Was Here For A Reason

Erin shares the story of her son Felix and how in the short two months that he was physically here he made a bigger impact than some can say in an entire lifetime. 

https://collective.world/my-son-was-born-with-a-rare-skin-disease-that-took-his-life-and-made-me-question-mine/?fbclid=IwAR2Kl9iGoG6xm_tcRYRnLB81jmdp8FE1J3bOYNgBUR5Qm3ZBO855rDKuWC0

Nov 23, 202201:05:25
Lindsay shares her story and debriefs about the Ride for Wrenleigh

Lindsay shares her story and debriefs about the Ride for Wrenleigh

In our first episode of Season 5 of the MiaThrives Podcast Lindays joins Melissa and Emily and shares the success of their families' event The Ride For Wrenleigh. Lindsay doesn't hold back and shares the raw emotional story of the loss of her daughter and how her family raises above the pain and sorrow and keeps Wrenleighs legacy alive. 

https://marketing7630.wixsite.com/ride-for-wrenleigh

Nov 17, 202253:50
In our final episode of the season Julia joins Emily all the way from Germany!
Apr 05, 202233:28
Emily is so thrilled to have the chance to finally "meet" Racquel after years of social media friendship!

Emily is so thrilled to have the chance to finally "meet" Racquel after years of social media friendship!

Racquel talks about her life with EB! From growing up in Hawaii to her many creative talents and day to day life with EB this episode is like sitting down with two friends over coffee!  

Mar 29, 202242:28
Koko and Shae creators and mother and daughter duo join us today on the MiaThrives Podcast!
Mar 22, 202243:42
Martine talks to Emily and Jill about living with EB, not against it in this can't miss episode!

Martine talks to Emily and Jill about living with EB, not against it in this can't miss episode!

Martine joins us all the way from Norway to share her story of learning to live with her EB, and not against it! This 15 year old is figuring out so much about herself and is committed to increasing awareness about EB and the amazing people in this community. 

Mar 09, 202242:57
Emily and her brother Adam sit down to discuss some exciting news in the EB community.
Mar 01, 202232:27
Claudia - Live, Love, Laugh
Feb 22, 202239:45
Katleen's shares her amazing story with MiaThrives.

Katleen's shares her amazing story with MiaThrives.

Joining us all the way from Belgium Katleen shares her story with Emily and Jill.   As a mother and a partner to individuals with EB Katleen is so open and honest. You don't want to miss this episode! 

Feb 15, 202201:03:31
Our friend Mary joins the MiaThrives podcast to catch us up on her very full life!
Dec 03, 202123:09
We are thrilled that Alex chose the MiaThrives Podcast to share his story of a life with EB.

We are thrilled that Alex chose the MiaThrives Podcast to share his story of a life with EB.

Alex takes a huge leap into joining the EB community by sharing his story.  He speaks with such honesty about the ups and downs of having EB and how it impacts his very full life.  

Check out Alex on YouTube and Twitch. 

https://www.youtube.com/channel/UCehGojRE8X-DXzOoX0qfEgw

https://www.twitch.tv/mrdoudrocks

Nov 26, 202147:14
Julia - Love, Memories, Peace and Advocacy.
Nov 10, 202131:52
Sandy - We've been waiting for so long to chat with this incredible woman! It was worth the wait!
Nov 03, 202147:02
Welcome to Season 4 - Shirvani - Babies, babies, babies
Oct 27, 202101:00:50
Shirvani - Body Positivity, Disability and EB Advocate and Model, Mother and just one of the most amazing individuals you will ever meet!
Apr 12, 202101:02:13
Sanja - her adventurous life, thriving with EB and loving yourself!

Sanja - her adventurous life, thriving with EB and loving yourself!

We are very excited to share this episode with one of our amazing community members, Sanja. We learned so much about what thriving with EB means to her and all about her incredibly resilient family. You don't want to miss this very special episode!

Debra Norway
Mar 29, 202135:09
We are so lucky to have the opportunity to chat with Kadee, a mother, an advocate, a caretaker and a true example of an Angela's Angel Award Winner.
Mar 22, 202138:35
"Full & Colourful" a conversation with the unstoppable and unparalleled Toni
Mar 15, 202146:27
Angie - Mother, Caretaker, Advocate and one of this year's Angela's Angel Award Winner
Mar 08, 202130:11
Special Guest Star Liz Trinnear kicks off Season 3!
Feb 28, 202150:16
Les - Music, live streaming and a life with EB
Dec 28, 202040:04
Stacey - Listening to your body, motivation and movement!
Dec 21, 202032:35
Erin - Working, traveling and thriving with EB

Erin - Working, traveling and thriving with EB

Socks, socks, and more talk about socks! Erin and Emily share their love of tattoos, traveling and socks with Jill in this fun episode.  

Dec 14, 202026:23
Lena - Strength, Power, Beauty
Dec 07, 202036:57
Ida - No topic is off limits! Sexuality and EB and so much more!
Nov 30, 202054:16
 Adapting and Embracing with Cindy
Nov 23, 202035:32
Tim Au-Yeung- Artist and Advocate

Tim Au-Yeung- Artist and Advocate

http://timauyeung.com/

https://www.ebresearch.org/venture-into-cures.html



Being strong  

When you want to break down 

Keeping a smile  

When it’s easier to frown. 

 

Working through your troubles 

Not just push them away 

Living my best life,  

Every day 

 

Being thankful 

For the time we have here 

Bringing people together 

To help you face the fear 

 

Thrive 

To survive  

A cure 

To endure.

Nov 16, 202032:53
Hodges and his #EBLifestyle
Nov 09, 202001:03:52
Welcome Emily to the MiaThrives Podcast

Welcome Emily to the MiaThrives Podcast

The MiaThrives podcast has a new co-host and we are thrilled for you to meet her! 

Nov 02, 202034:09
Exciting News for EB Awareness Week - Angela’s Angel Award 2020
Oct 26, 202002:31
Rachel and "Befriend EB"- The Friendliest EB Organization
Oct 19, 202041:21
Episode 11 - Shane, a firefighter with EB, his story, his family and his heroes

Episode 11 - Shane, a firefighter with EB, his story, his family and his heroes

Melissa and Jill use their time during social distancing to enjoy an amazing conversation with Shane.   An amazing family man who's career as a firefighter was something he dreamed of, worked for and that challenges his EB daily.  

https://miathrives.org/


Mar 20, 202051:09
Episode 10 - Nisha - Accepting and Advocating

Episode 10 - Nisha - Accepting and Advocating

Nisha shares her story of accepting her EB, announcing her EB and becoming an advocate for Rare Disease.  An incredible woman with a very full life who is finding her voice and helping others to find theirs as well! 

https://everylifefoundation.org/

https://rareadvocates.org/rdw-2/

https://www.youtube.com/watch?v=I00QH1OwLNE&feature=youtu.be

Mar 13, 202037:55
Episode 9- Jim and the MiaThrives Golf Tournament

Episode 9- Jim and the MiaThrives Golf Tournament

Jill’s husband Jim joins the MiaThrives ladies to talk about their annual golf tournament and why he became involved in EB awareness.
Mar 03, 202020:07
Episode 8 - Ryan - Bella's Ball 2020

Episode 8 - Ryan - Bella's Ball 2020

Melissa, Jill and Ryan discuss his incredible event, the annual Bella's Ball in support of DEBRA Canada’s programs and services assisting families with Epidermolysis Bullosa.  His daughter Raquel was given a sitski through the DEBRA fund a butterfly program which allows her to ski and race with her family.  

https://www.debracanada.org/2020-bellas-ball-broomball-open

Feb 26, 202034:20
Episode 7 - A purpose, a passion and a journey with Mark

Episode 7 - A purpose, a passion and a journey with Mark

You cannot miss this episode! Mark joins Melissa and Jill to talk about EB Simplex, Athletes4EB, mental health, a purpose driven life and finding your way.  

Feb 17, 202038:59
Episode 6 - Sarah shares her talents, her loves and her busy life with JEB

Episode 6 - Sarah shares her talents, her loves and her busy life with JEB

Sarah spends time with Melissa and Jill talking about her busy days, her fur babies and living a purposeful life with JEB.   There is a lot of talk about beloved and very special pets in this episode.  You don't want to miss this!   

Feb 10, 202034:08
Episode 5 - Talented musician Ed talks family, friendships, and finding your path with DDEB

Episode 5 - Talented musician Ed talks family, friendships, and finding your path with DDEB

We are thrilled to have the chance to talk with one of our very favourite community members.  Ed has a heart as big as his incredible talent and we can't wait for you to meet him and hear his story.  

Feb 03, 202027:43
Episode 4 - EB World Congress 2020

Episode 4 - EB World Congress 2020

Melissa and Jill recap the last week at MiaThrives. With part of the MiaThrives team in London at the EB World Congress and Jill back at home it was a fun, informative, and busy time, and Jill even attempted a cartwheel! 

Jan 28, 202029:50
Episode 3- Novelette a beautiful story of life with RDEB

Episode 3- Novelette a beautiful story of life with RDEB

Melissa and Jill are so excited to be joined by Novelette, a true mentor, leader and thinker in the EB community.  An unforgettable discussion about life with RDEB, the joy, the pain, the everyday "stuff" and how we can best support each other! You don't want to miss this! 

Jan 20, 202051:21
Episode 2- Talking DDEB, Family and Tattoos and with our friend Chris

Episode 2- Talking DDEB, Family and Tattoos and with our friend Chris

MiaThrives community member,  EB warrior, incredible husband and father and amazing tattoo Artist Chris joins Melissa and Jill to discuss his family's journey with EB! 

Jan 13, 202037:32
Welcome Friends, let's get this Podcast started!!
Jan 07, 202032:52