Claim OwnershipBecause We Are Strong
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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.
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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 the disease burden. Let’s dive in!____________________________________________This episode was produced and edited by : Ruwan Basnayake___________________________________________ This episode was sponsored by:The CUBE and OOLER systems are two really...
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 defibrillated 3 times. Sharing her story of resilience and lessons for living victoriously, Tori is a bestselling author of the book, From Vulnerable to Victorious: Turning Your Chronic Illness Into Your Victory Story. Growing up, she was an avid athlete, partici...
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 rare diseases and the rest of the world._____________________________________________Meet Kenzi: I had a positive pap in 2016, got a biopsy and found out it was stage 1 cancer. I was told I had HPV 16 and that’s what had caused my cancer. I Had a colposc...
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 own business, she is the Content Manager at Diversability and the Social Media Manager at Omnium Circus. She spent almost a decade in the broadcast industry as a primetime television director until she was a victim of ableism. Now, she uses her art and storytelling to disma...
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 to navigate life with a chronic illness as a MS sufferer from a ethnic background .Sharing real unfiltered stories from chronic , disability and invisible illness warriors to create better representation and a safe space for open conversations especially for black and b...
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 compliant commercial sponsorship of targeted searches. To healthcare data owners, RDDT is a first to market innovative high-value, low-risk data commercialization model, serving the most vulnerable and underserved patient in healthcare – the rare disease...
_____________________________________________________________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 purpose. As a patient advocate and a Sickle Cell Heath Coach for the CARISMA study. Dima’s mission is to help other sickle cell warriors to live productive lives through the pain. The ‘Unleashing Royalty’ author also has an extensive pageant resume. She won the titles of Miss Bl...
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 strong presences across Tik Tok (100k views on average) and Instagram (15.5k+ followers), and, as of this year, I have been developing my YouTube and Podcast content. I have always been a creative innovator and possessed a high-level work ethic, especially when it comes t...
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 proud of that, because she worked extremely hard for it! However, she is a human being first, and has worked hard to define her self-worth outside of her achievements. So here are some things about Michaela the human that you should know:Michaela’s favorite quote was sai...
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 sure we will have tons in common! Let’s dive in!____________________________________This episode was edited by: Ruwan T.____________________________________This episode is sponsored by:The CUBE and OOLER systems are two really cool gadgets that fit over the top ...
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 inner world, the outer world takes over. However, when we establish and cultivate a daily centering practice, we learn to navigate the outer world with intention and attention.I am a life coach, mindfulness teacher, podcast host, and author of Better Daily Min...
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 company cannot reach its patients, a reason why building and fostering strong relationships with the patient audience is absolutely critical. Amy Grover has been advocating, educating, and empowering the rare disease patient community for over 13 years. She ...
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 interventionist, a facilitator of powerful parenting events, and a happy husband and father to two adults. This episode is especially for all you parents out there, so let’s dive in!_____________Meet Aaron:Aaron is extremely ADHD.Founder of “Parenting Teens that...
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 2012 he received the Queen’s Diamond Jubilee Medal and the Rick Hansen Difference Maker medallion. As a writer and blogger, his passion is to inspire and motivate others in their personal and professional development through his many adventures and reflec...
1Hey 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 as a licensed marriage and family therapist.My son got his diagnosis when he was 7 weeks old. It turned my life upside down and I quickly learned that there wasn't much space for the "hard" feelings related to parenting a child with a disability. It's become a bit of a life miss...
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 adaptive beauty really is. I'm your host Kristine so let's dive in. ______________________________________________This episode is sponsored by:The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control t...
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 anxiety and depression, the unique challenges of being hospitalized for psychiatric care during the COVID-19 pandemic, and the refuge she has always found in music. It is her story of choosing life.Connect with Heather:Website: www.heather-hutchison.comFacebook: www.faceb...
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