Shows
Because We Are StrongINTERVIEW: Kenzi Paquin & Cervical CancerYour 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 colposcopy, got it lasered & was good to go. I was supposed to have sem...2022-05-1752 minBecause We Are StrongINTERVIEW: LindsayThe CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.Support the show2022-04-1926 minBecause We Are StrongINTERVIEW: Marie & R.A.R.E AdvocatesMeet 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 dismantle the ableist society.________________________________________________Connect with Marie:Www...2022-04-121h 06Because We Are StrongINTERVIEW: AmberThe CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.Support the show2022-04-0541 minBecause We Are StrongINTERVIEW: Roxy Murray & Multiple SclerosisRoxy ( 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 brown people from around the world.Her number one goal is to use her voice to demand...2022-03-2939 minBecause We Are StrongINTERVIEW: BrittanyThe CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.Support the show2022-03-2615 minBecause We Are StrongINTERVIEW: 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 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 patient. To Bio-pharma we are a newly discovered compliant pathway allowing commercially sponsored diagnostic searches against provider-owned electronic patient data. RDDT is the neutral market intermediary that operates within a regulatory saf...2022-03-2245 minBecause We Are StrongINTERIVEW: 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 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 Black Dorchester USA, Miss Black Massachusetts USA, and Mrs. Massachusetts International. In 2018, Dima lau...2022-03-1523 minBecause We Are StrongINTERVIEW: Gigi Robinson & Manifesting A Life You LoveMeet 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 to making a difference with my projects. Originally, I wanted to be a ph...2022-03-0848 minBecause We Are StrongINTERVIEW: Michaela Mardiga and The Valentine ProjectMeet 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 said by Anne Frank: “How wonderful it is t...2022-02-2247 minBecause We Are StrongINTERVIEW: Tami Stroud & The FibrospotHey 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 of you...2022-01-2526 minBecause We Are StrongINTERVIEW: Kristen Manieri and Better Daily MindfulnessMeet 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 Mindfulness Habits. I help people live a mo...2022-01-1133 minBecause We Are StrongINTERVIEW: Amy Grover and Catalyst PharmaFor 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 stands at the helm of Catalysts’ patient outreach initiatives, making bonds stronger for a mutually beneficial existence. Amy partners with related patient organizations and as...2021-12-2829 minBecause We Are StrongINTERVIEW: Aaron Huey and Parenting Teens that StruggleHey 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 Struggle” and the Host of the #1 P...2021-12-2135 minBecause We Are StrongINTERVIEW: Sam Thiara & Telling Your StoryThrough 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 reflections on life’s journey.Sam has mentored hundreds and engaged with thousands of students and professionals over the last many...2021-12-1438 min