The MiaThrives Podcast: Recent Episodes
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 https://www.patreon.com/miathrives
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
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Sarah uses her EB as a motivator to propel her forward rather than hold her back. Creating EB-friendly products grew into her passion and business creating safe, vegan, ethically sourced, handmade skin care products.
www.pinkposhfox.com
IG: https://www.instagram.com/pinkposhfox/
FB: https://www.facebook.com/PinkPoshFox/
TikTok: https://www.tiktok.com/@pinkposhfox
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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.
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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.
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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.
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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.
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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
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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!
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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
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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
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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/
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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!
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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/
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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.
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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/
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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/
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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!
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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
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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
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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/
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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/
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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
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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!
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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
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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
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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
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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
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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/
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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
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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
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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/
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Socks, socks, and more talk about socks! Erin and Emily share their love of tattoos, traveling and socks with Jill in this fun episode.
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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/
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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/
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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
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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.
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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_/
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The MiaThrives podcast has a new co-host and we are thrilled for you to meet her!
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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.
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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/
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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/
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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
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Jill’s husband Jim joins the MiaThrives ladies to talk about their annual golf tournament and why he became involved in EB awareness.
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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
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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.
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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!
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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.
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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!
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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!
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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!
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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
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