Because We Are Strong
Welcome to the because we are a strong podcast. A podcast inspired by stories of struggle and strength. A place where you can feel safe enough to share every part of your rare story. The good, the bad, the happy, and anything in between. Many times those in the rare disease community feel isolated from the rest of the world. Rare disease comes with its own set of unique challenges, ones that are hard for the outside world to understand. Through our stories, we can bridge the gap between a lack of knowledge and understanding. Your story has the potential to touch and reach those who can relate and who otherwise feel alone. Together through our struggles, we can show our strength.
Episodes
99 episodes
INTERVIEW: Mathew Horsnell & Narcolepsy
Today we are sitting down with Matthew Horsnell from TREND Community. TREND Community’s mission is to improve the quality of life for those living with rare and chronic diseases. They utilize technology to leverage social media to understand...
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Season 3
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Episode 97
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30:51
INTERVIEW: Tori and Congenital Heart Defect
Meet Tori:Tori is a congenital heart defect survivor and has undergone multiple open-heart surgeries and procedures throughout her life, including a life-changing visit to the ER where she narrowly escaped cardiac arrest and was d...
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Season 3
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Episode 98
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20:15
INTERVIEW: Kenzi Paquin & Cervical Cancer
Your listening experience is extremely important to us with that being said please forgive Kristine's audio track. We apologize and will continue to work to improve your overall experience. Thank you for helping us bridge the gap between ra...
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Season 3
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Episode 95
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52:49
INTERVIEW: Marie & R.A.R.E Advocates
Meet Marie: Marie Dagenaia-Lewis is a very pridefully disabled art activist, speaker, author and creator of the Chronically Spooky series, a coloring book inspired by Disability & Chronic Illness. On top of running her ow...
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Season 3
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Episode 95
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1:06:35
INTERVIEW: Roxy Murray & Multiple Sclerosis
Roxy ( aka Roxanne Channel ) MurrayIs a Multiple Sclerosis Warrior , Blogger, Podcaster , Fashion Stylist and MS Advocate.She created her podcast @SickandSickening_Podcastwhile trying to combat her own depression and isolation...
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Season 3
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Episode 93
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39:00
INTERVIEW: David Connor & RDDT
Rare Disease Data Trust is a new and innovative patient-centric diagnostic model that accelerates the discovery and diagnosis of lost rare disease patients, through direct collaboration with large provider groups and health systems, and c...
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Season 3
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Episode 91
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45:10
INTERIVEW: Dima & Through The Pain
_____________________________________________________________At the age of six months, Dima Hendricks was diagnosed with Sickle Cell Anemia. In the face of adversity, Dima is determined to live a life filled with purpo...
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Season 3
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Episode 90
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23:40
INTERVIEW: Gigi Robinson & Manifesting A Life You Love
Meet Gigi Robinson:I am a digital artist, health & wellness advocate, current M.S. Candidate, and graduate of the University of Southern California with a Bachelors in Fine Arts, Design, and Photography. I have st...
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Season 3
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Episode 89
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48:17
INTERVIEW: Michaela Mardiga and The Valentine Project
Meet Michaela:Michaela G. Margida is one very smart cookie who has dedicated her life to acquiring and translating knowledge into meaningful actions that improve the world. She happens to be a Ph.D. scientist, and she is very pro...
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Season 3
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Episode 88
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47:11
INTERVIEW: Tami Stroud & The Fibrospot
Hey Peeps! I’m your host Kristine and I’m flying solo! Today we are sitting down with Tami, founder of The Fibro Spot, an online shop dedicated to people with Fibromyalgia. Tami was diagnosed with Fibromyalgia herself in 2009 and I am su...
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Season 3
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Episode 87
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26:28
INTERVIEW: Kristen Manieri and Better Daily Mindfulness
Meet Kristen:Have you ever had the feeling that you’re off course? Or maybe that life is moving so fast that you don’t even have time to catch your breath, never mind check in with yourself? Without setting time and space to be with our...
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Season 3
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Episode 86
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33:44
INTERVIEW: Amy Grover and Catalyst Pharma
For a Pharma company with an approved treatment for a rare disease, patient advocacy and community relations play an integral role in its expansion and progress. Without the support and trust of the rare disease community a pharmaceutical compa...
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Season 2
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Episode 85
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29:34
INTERVIEW: Aaron Huey and Parenting Teens that Struggle
Hey Peeps! It’s Kristine and I am flying solo! Today we are talking with Aaron Huey, the founder of Parenting Teens that Struggle and the host of the #1 parenting podcast Beyond Risk and Back. He is also a Parent Coach, teen addiction interv...
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Season 2
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Episode 84
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35:49
INTERVIEW: Sam Thiara & Telling Your Story
Through his tireless work, Sam continues to be committed to the betterment of communities. In 2016, Sam received the Governor General’s Sovereign’s Volunteer Medal as a past recipient of the Governor General’s Caring Canadian Award. Also, in 20...
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Season 2
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Episode 83
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38:07
INTERVIEW: Amanda Griffith Atkins and Prader-Willi Syndrome
Hey peeps, this week I am so excited to sit down and chat with Amanda, not only is she a member of this RARE. herd but she is also a therapist. Meet Amanda:I'm a mom to a 12-year old with Prader-Willi Syndrome as well...
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Season 2
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Episode 82
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30:40
INTERVIEW: Riley and Spina Bifida
Hey Peeps welcome back to another episode of because we are strong this week we are sitting down with Riley who was diagnosed in utero as a spina beautiful. Riley is using her experience to move mountains and show others how powerful adaptiv...
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Season 2
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Episode 81
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22:36
INTERVIEW: Heather Hutchinson and Holding On by Letting Go
Meet Heather:Heather Hutchison is an award-winning singer/songwriter and author of the new memoir, Holding On by Letting Go. She shares her story of life as a blind person both in Canada and Latin America, her struggles with anxi...
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Season 2
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Episode 80
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25:17
Those RARE. Girls: Thankfully RARE. 2021
Happy THANKSGIVING peeps! Join us as we go over a year to be grateful for. __________________________________________________________Connect with us:@findyourrareon all your favorite social media channels
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Season 2
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Episode 79
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27:37
INTERVIEW: Christine Rich & Chronic
Christine Rich is an award-winning marketing executive, retired spin instructor, speaker, mentor, mama, advocate, and author.She is passionate about raising awareness about the intersection of chronic illness and mental health and advoca...
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Season 2
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Episode 78
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39:34
Those RARE. Girls: T.Co's Story
Theresa (aka T.Co) is the marketing coordinator for RARE. Her journey in the RARE. world began in 2017 after an unfortunate accident with a camping chair. She developed a rare condition called Complex Regional Pain Syndrome (CRPS) where her ...
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Season 2
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Episode 77
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10:49
INTERVIEW: Leeya Alperin & GLA
Hey Peeps! Welcome back to another weekly episode of Because We are Strong! This week we are talking with Leeya, who was only 15 years old when she started down this rare journey. In her sophomore year, she was diagnosed56 with GLA whi...
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Season 2
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Episode 76
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31:02
INTERVIEW: Tri Bourne Olympian & Myositis Warrior
Hey Peeps! It’s Kristine and I am flying solo! Today we have a very special guest, Olympic volleyball player Tri Bourne! Not only is Tri an elite athlete, he also is a RARE. athlete, having been diagnosed with Dermatomyositis in 2016. This i...
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Season 2
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Episode 75
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1:14:11