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The MiaThrives Podcast

The MiaThrives Podcast

By MiaThrives
Join Melissa, Emily and Jill 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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In our final episode of the season Julia joins Emily all the way from Germany!
Julia is a very busy young woman with an amazing story to share with the EB community.  Trust us you don't want to miss a chance to hear about this student and her very full life in Germany.  https://www.eb-haus.org/
33:28
April 05, 2022
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!  
42:28
March 29, 2022
Koko and Shae creators and mother and daughter duo join us today on the MiaThrives Podcast!
In this weeks can't miss episode we chat with Kourtney and her amazing mom Nurse Nelle to discuss their amazing connection, the business they've created and everything in between!   https://kokoandshae.com/
43:42
March 22, 2022
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. 
42:57
March 09, 2022
Emily and her brother Adam sit down to discuss some exciting news in the EB community.
Adam, a Canadian Pharmaceutical Consultant joins the MiaThives Podcast to discuss three new and exciting drugs for the EB community. EB is close to his heart because co-host Emily is his sister, tune in to this informative episode below. https://epidermolysisbullosanews.com/2021/12/03/fda-extends-decision-on-filsuvez-gel-for-skin-wounds-to-february/ https://epidermolysisbullosanews.com/2020/11/11/treatment-begins-phase-3-trial-of-d-fi-rdeb-wound-gene-therapy/ https://castlecreekbio.com/autologous-fibroblast-pipeline/gene-therapy-dystrophic-epidermolysis-bullosa/ https://epidermolysisbullosanews.com/kb103/
32:27
March 01, 2022
Claudia - Live, Love, Laugh
We are beyond thrilled to welcome Claudia to the MiaThrives Podcast!  This accomplished young woman is one of greatest advocates we have ever met and has opened up about her life with EB in so many ways and for so many years.  A real talk about struggles, family, relationships, and so very much more.   https://debraireland.org/
39:45
February 22, 2022
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! 
01:03:31
February 15, 2022
Our friend Mary joins the MiaThrives podcast to catch us up on her very full life!
Mary is such an amazing and accomplished young woman who shares her story with our listeners.  New jobs, new adventures and a connection to Selena Gomez are just a few of the topics covered in this episode that you do not want to miss!  Mary's Kaleidoscope Story Mary's EB Research Partnership debut 
23:09
December 03, 2021
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
47:14
November 26, 2021
Julia - Love, Memories, Peace and Advocacy.
Through smiles and tears Julia shares the story of her adored brother and how their families experience with EB has helped her find her purpose and passion.  https://www.instagram.com/yogijewels/ https://miathrives.org/eb-hacks-yoga-class-collaboration-with-julia/
31:52
November 10, 2021
Sandy - We've been waiting for so long to chat with this incredible woman! It was worth the wait!
Please join Emily and Jill as they finally get the chance to speak with Sandy about growing up with EB, pregnancy, careers, role models and learning more about EB.  As an expectant mom Sandy is incredibly open and honest about her joys and her fears.  You truly do not want to miss this warm, engaging woman and her amazing story!  https://www.instagram.com/sandrakarenhines/
47:02
November 03, 2021
Welcome to Season 4 - Shirvani - Babies, babies, babies
We are so excited to welcome Shirvani back with some very exciting updates. She is so honest and open about her fears, her joys and the ups and downs of navigating pregnancy and EB.   Check out Shirvani's YouTube Account here! https://www.patreon.com/miathrives
01:00:50
October 27, 2021
MiaThrives Podcast - Looking forward to season 4
Jill and Emily are thrilled to be back with Season 4 of the MiaThrives Podcast beginning next Wednesday October 27th at 11:00 during EB Awareness week! Please join us! 
00:45
October 20, 2021
Shirvani - Body Positivity, Disability and EB Advocate and Model, Mother and just one of the most amazing individuals you will ever meet!
Emily and Jill spend an hour with Shirvani from South Africa. This incredibly dynamic woman, mother, wife, advocate, model and so much more is open and honest about her life with EB, becoming and being a mother, healthcare decisions and thriving in your own way.  We truly didn't want this conversation to end!  https://www.instagram.com/shirvani.naran/ https://www.facebook.com/Shirvaninaran
01:02:13
April 12, 2021
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 
35:09
March 29, 2021
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.
Join Emily and Jill as they are able to steal Kadee away from her incredibly busy life with 7 kids to discuss her joyful, big, thriving family!  Kadee 
38:35
March 22, 2021
"Full & Colourful" a conversation with the unstoppable and unparalleled Toni
If you want to hear from someone who is the very definition of thriving than you need to listen to this episode with Toni.  Toni is "grabbing life by the horns" and she shares it all with us today!  Debra South Africa 
46:27
March 15, 2021
Angie - Mother, Caretaker, Advocate and one of this year's Angela's Angel Award Winner
Our first Angela's Angel Award Winner Angie joins us for this very special episode.   https://www.debra-international.org/ http://www.debra.org.za/
30:11
March 08, 2021
Special Guest Star Liz Trinnear kicks off Season 3!
Join Emily and Jill as they share a conversation with the fabulously talented, extremely candid and incredibly warm Liz Trinnear.  Everything from red carpet shoes to everyday struggles. You don't want to miss this!  http://www.liztrinnear.ca/about Liz Trinnear tells her story here
50:16
February 28, 2021
Les - Music, live streaming and a life with EB
Emily and Jill have a lot to learn from Les in terms of video games! Join them for a really fun and honest conversation about his day to day life with EB, his very popular live streaming and his love of music!  https://www.facebook.com/ChillingWithLJ/ http://www.twitch.tv/Chilling_With_LJ
40:04
December 28, 2020
Stacey - Listening to your body, motivation and movement!
Emily and Jill are so excited to speak with Stacey about a topic we haven't really delved into before.  Athletics, training, motivation and movement.   Such great stuff! This is a must listen!  https://www.staceycarswell.com/
32:35
December 21, 2020
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.  
26:23
December 14, 2020
Lena - Strength, Power, Beauty
Lena takes some time to speak with Emily and Jill before her huge photoshoot to discuss her busy and thriving life with EB.  https://www.debra-austria.org/
36:57
December 07, 2020
Ida - No topic is off limits! Sexuality and EB and so much more!
Emily, Ida and Jill discuss the importance of those topics that are often overlooked when it comes to a life with EB.  Ida's story is something you truly can't miss!  https://www.debra.no/
54:16
November 30, 2020
Adapting and Embracing with Cindy
Jill and Emily share an incredible conversation with Cindy.  She opens up about her recent EB diagnosis after a lifetime of searching for answers. Now she has found support and an incredible EB community she is excited to be a part of.  EB blog freshly launched: https://mybutterfly.life Personal website: https://cindymateus.com Web studio website: https://dsignpoint.com Debra Spain 
35:32
November 23, 2020
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.
32:53
November 16, 2020
Hodges and his #EBLifestyle
An exciting day for the MiaThrives podcast as Emily and Jill get the opportunity to speak with one of the leaders of our EB community and learn more about his #EBlifestyle!  https://www.instagram.com/eblifestyle_/
01:03:52
November 09, 2020
Welcome Emily to the MiaThrives Podcast
The MiaThrives podcast has a new co-host and we are thrilled for you to meet her! 
34:09
November 02, 2020
Exciting News for EB Awareness Week - Angela’s Angel Award 2020
In celebration of EB Awareness Week 2020 MiaThrives is looking for our Angela’s Angel Award recipient 2020. Please go to www.miathrives.org for more information and details.
02:31
October 26, 2020
Rachel and "Befriend EB"- The Friendliest EB Organization
Welcome to Season 2 of the MiaThrives podcast!  Melissa and Jill are joined by Rachel who discusses her incredibly full life and her amazing organization Befriend EB.  https://www.facebook.com/befriendeb/
41:21
October 19, 2020
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/
51:09
March 20, 2020
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
37:55
March 13, 2020
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.
20:07
March 03, 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
34:20
February 26, 2020
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.  
38:59
February 17, 2020
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!   
34:08
February 10, 2020
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.  
27:43
February 03, 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! 
29:50
January 28, 2020
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! 
51:21
January 20, 2020
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! 
37:32
January 13, 2020
Welcome Friends, let's get this Podcast started!!
Melissa and Jill of MiaThrives start the podcast adventure with quick history of who they are, the why of MiaThrives and a Butterfly Child named Mia! This is the start of a journey for all of us in the EB community, an opportunity for frank and honest discussions, amazing guests, fun topics, challenging issues, purpose, inspiration, and so much more.   Join us afterwards on our facebook group to continue the conversation.  www.miathrives.org 
32:52
January 07, 2020