The MiaThrives Podcast

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/

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!  

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/

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. 

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/

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/

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! 

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 

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

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/

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/

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

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! 

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

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 

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 

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 

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/

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

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

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/

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

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/

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/

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 

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.

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_/

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

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.

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/

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/

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

Jill’s husband Jim joins the MiaThrives ladies to talk about their annual golf tournament and why he became involved in EB awareness.

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

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.  

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!   

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.  

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! 

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! 

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! 

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