Show cover of Because We Are Strong

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.

Tracks

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 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 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 show
30:51 06/28/2022
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 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, participating in volleyball, basketball, and track in high school. She went on to play volleyball at Corban University and later joined the track team at George Fox University as a high jumper.With a heart for others affected by chronic illnesses such as CHD, Tori started a lifestyle blog where she shares lifestyle and chronic illness tips. Part of her mission is to have a “heart that beats for others.”  Tori does this through her blog and chronic illness coaching program, where she coaches CHD warriors on creating a game plan to thrive with CHD and use their experiences for impact and purpose. _________________________________________Connect with Tori:Learn more about the book here: https://www.amazon.com/dp/B09J43644Q/Website: https://www.torijoygeiger.com/Instagram: https://www.instagram.com/torijoygeiger/Facebook: https://www.facebook.com/torijoygeigerDiscounted Ebook For RARE Listeners: https://www.torijoygeiger.com/ebookdiscount (Use Code RARE for 100% off the ebook download)____________________________________________This episode was produced and edited by : Ruwan Basnayake___________________________________________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 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 show
20:15 06/21/2022
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 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 semi annual paps but didn’t go. I had 5 babies (two after the first diagnosis) and got wrapped up in life and never made Pap smears a priority. I didn’t know it was important.. I didn’t go get a Pap after my last daughter was born.After four years of not getting a Pap smear, I went in in September 2020..i had a positive pap and dysplasia was found.they did a colposcopy and biopsy. Staged me at 3b. I did a leep procedure. I went through two rounds of chemo (Carboplatin and paclitaxel) and internal/external radiation. And they took me back very quick to get a total hysterectomy. The next pet scan showed two of my pelvic lymph nodes were being effected.So I had a second surgery.. I got para-aortic lymph nodes dissection. A week after that surgery I went to the hospital for pain and they found out I had an internal secondary hemorrhage. They did a surgery for packing and vault suturing. I also required a blood transfusion. (I’m anemic anyways) Following that I had surgery for a cuff tear that required a revision. After that I developed cuff cellulitis infection. I was hospitalized with Iv antibiotics. I got my last a pet scan in April 2021 and The surgeries were successful to get rid of the cancer. My scan was clear. I had to go in every 3 months for a check up scan (CT or PET) my husband got out of the military and we moved from California to Michigan to buy our first house. I set up my follow up appointment. It NEVER crossed my mind that the cancer could be back.. I was determined and had plans to live life cancer free. Due to my Covid symptoms they called me and read to me my results. I had a 5.6 cm tumor in my pelvic/abdominal wall cavity. Biopsy came back cancerous. I started chemo right away. They sent me to a surgeon. He took me back for my 6th surgery. Performed Debunking & small bowel resection. Tumor was removed en bloc, with 2 segments of small bowel. The surgeon anticipates 3-5 more surgeries. After that, I had went to the ER for breathing struggles and they had found a nodule on my left lung. I just got a biopsy recently and am waiting for my results. I also go talk to the surgeon next week to discuss more surgeries. In the meantime i have gotten Covid (for the second time) I’ve have had to wear a 24 hour heart rate monitor. I have severe vertigo and was passing out. After hitting my head numerous times, they Diagnosed me with post concussion syndrome. The dr found out why it was happening and diagnosed me with POTS..and I have a vitamin b 12, vitamin d, magnesium and potassium deficiency which I am taking medicine for now. I’m already anemic and have needed multiple blood infusions through the last couple years.I’m just happy and thankful to be at home right now with my family instead of living in the hospital._____________________________________The 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 show
52:49 05/17/2022
INTERVIEW: Lindsay
The 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 show (https://www.patron.com/findyourrare)
26:52 04/19/2022
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 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.instagram.com/r.a.r.e.advoc8Www.rarebymariedl.threadless.com________________________________________________This episode was edited by: Ruwan Basnayake________________________________________________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 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 show (https://www.patron.com/findyourrare)
66:35 04/12/2022
INTERVIEW: Amber
The 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 show
41:05 04/05/2022
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 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 inclusion and visibility for all. She does this by helping others empower themselves to embrace their mobility aids with style, grace and her hashtag #wearenotinvisibleBased in LondonRoxy previously studiedFashion Design , Styling and Promotion at Middlesex University London and went on to become a fashion stylist .After being diagnosed with Multiple Sclerosis she could no longer work as a stylist but transferred her knowledge of fashion and styling to help herself and others embrace their disabilities, illnesses empowering others to embrace their mobility aids through her social media accounts .She now works closely with multiple MS organisations to help create better representation and diversity for all but focusing on the black and queer narratives in hopes to work towards a better more diverse MS community that fully represents the full spectrum and diversity within it and possibly a cure .Please include any social media handles and/or any direct links you would like us to include in your episode show notes.@multiplesclerosisfashionista@sickandsickening_podcast@sickandsickeninghttps://youtube.com/channel/UCW01_3SIHVIic0PfiuDN5nQThe 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 show
39:00 03/29/2022
INTERVIEW: Brittany
The 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 show (https://www.patron.com/findyourrare)
15:09 03/26/2022
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 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 safe harbor and can execute these powerful and important searches using world-class Artificial Intelligence and Machine Learning technology. Our mission is to end the rare disease diagnostic odyssey and accelerate the discovery and diagnosis of lost rare disease patients.This episode was produced and edited by : Ruwan Basnayake___________________________________________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 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 show (https://www.patron.com/findyourrare)
45:10 03/22/2022
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 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 launched the #ThroughThePain brand. The podcast was later launched in 2020. ______________________________________________________________Dima’s Linkswww.DimaHendricks.comInstagram @DimaHendricksDima’s BookUnleashing Royalty: A R.O.Y.A.L Formula to Help You Walk into Queendom with Purpose. www.UnleashingRoyalty.comAvailable on: Amazon https://amzn.to/3IJSi7nBarnes & Noble https://bit.ly/3MnyLMa#ThroughThePainWebsite: www.ThroughThePain.orgMerch: https://throughthepain.store/collections/allLinktree: https://linktr.ee/ThroughThePainPodcastThe 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 show
23:40 03/15/2022
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 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 photographer, but, since then, have transitioned my skills of image-making into those that create an impact through storytelling. Living with chronic illnesses, I have been challenged in many ways with everyday tasks, such as showering, cooking, walking, and even sitting down.Despite all of the physical and psychological challenges that threatened the path to becoming who I am today, I have challenged adversity and dedicated a majority of my life to becoming a master content creator, always keeping my values of creating positive and impactful messages to my diverse audience as a priority. Content creation has been my passion since day 1 and I do not see that changing any time soon. I made a goal for 2021 to level up the impact my content has. Keep reading to see how I am taking steps toward that goal.___________________________________________Connect with Gigi:https://www.gigirobinson.com/social-1https://www.gigirobinson.com/contact@itsgigirobinson____________________________________________This episode was produced and edited by : Ruwan Basnayake___________________________________________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 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 show (https://www.patron.com/findyourrare)
48:17 03/08/2022
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 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 that nobody need wait a single moment before starting to improve the world.” Michaela is a big believer that the world needs her now - not after she has lost ten pounds, gotten a personal record in the marathon, revamped her entire wardrobe, gotten a high-paying job, or whatever other metric the world is using to define success today - and that the best way to improve the world is by being her authentic self.Her second favorite quote was said by her former boss, U.S. Senator Cory Booker: “Don't let your inability to do everything undermine your determination to do something.” It’s this attitude that inspired Michaela and her brother Gregory to start The Valentine Project in 2010, a 501(c)3 nonprofit that serves children affected by cancer or a chronic illness and their siblings. The Valentine Project works year-round toward the lofty goal of “making the world a kinder place, one child at a time” by recognizing the immense power that small acts of love have to create moments of hope and joy in a world that can sometimes feel very dark. Specifically, The Valentine Project sends personalized gifts to kids diagnosed with cancer or a chronic illness and their siblings each Valentine’s Day, and sends Kindness Cards to these special kids to continue cultivating compassion all year round.______________________________________________Connect with Michaela:The Valentine Project website: https://thevalentineproject.org/TVP Facebook: https://www.facebook.com/thevalentineprojectusa TVP Instagram: https://www.instagram.com/the_valentine_project/ TVP Twitter: https://twitter.com/valentineprojMichaela Facebook: https://www.facebook.com/michaela.gabrielle.cecilia/Michaela Instagram: https://www.instagram.com/dr.michaelagabrielle/ Michaela LinkedIn: https://www.linkedin.com/in/michaelamargida/ _______________________________________________This episode was edited by: Ruwan Basnayake______________________________________________This episode was 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 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 show
47:11 02/22/2022
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 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 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 show
26:28 01/25/2022
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 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 more conscious, connected, and intentional life._______________________________________________________________________________________Connect with Kristen:https://www.instagram.com/kristenmanieri_/https://www.facebook.com/60MindfulMinuteshttps://www.kristenmanieri.com____________________________________________________________________________________This episode was edited by: Ruwan Basnayake___________________________________________________________________________________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 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 show (https://www.patron.com/findyourrare)
33:44 01/11/2022
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 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 assists in their efforts to help the patient community. She conducts patient advisory boards to ensure Catalyst is creating relevant and meaningful tools and resources to provide to patients. Amy regularly connects with the LEMS patient community to confirm that Catalyst is doing right by the community and living the mission of the company. While Amy is not entrenched in the research and development of life science products, her work is deeply connected to the rare disease space. It is her mission to create awareness for LEMS which is an ultra-rare disease where there hasn't been attention given to the community in the past. She understands the importance of her responsibilities as a liaison between her company and the patients.Amy began her career in advocacy at Global Genes, a non-profit based in Southern California dedicated to serving the 350 million people affected by rare diseases globally. Amy is dedicated advocacy professional with 10 years of experience in educating over 500 small, medium, and large patient organizations on development and patient engagement. She managed the foundation alliance at Global Genes and offered counseling, tools, and resources. Through these efforts and educational opportunities, these organizations were able to grow and develop and excelled in finding and funding researchers, policy and legislation, capacity building, and community support._________________________________________________This episode:• The importance of building community and connections in rare diseases.• Why all stakeholders in rare diseases need to have open and honest communication.• What does advocacy mean in rare diseases, and how can patients, parents, and caregivers fit into the advocacy role?_____________________________________________Connect with Amy@theamygrover@CatalystForRarehttps://www.linkedin.com/in/amy-grover-b7464429/____________________________________________This episode was edited by : Ruwan Basnayake____________________________________________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 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 show
29:34 12/28/2021
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 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 Parenting Podcast “Beyond Risk and Back” which is Mental Health News Radio Network's highest-rated show internationally. He is also a Parent Coach for parents of kids at risk, a teen addiction interventionist, facilitates powerful parenting events, and is a very happy husband and father of 2 young adults.Aaron is an internationally known lecturer on archetypal imagery, body language, and martial arts and the Founder and President of Fire Mountain Programs, and since 2004 has run kids camps, teen camps, and family programming. In 2009, he and his wife Christine opened a residential Mental Health and Dependency recovery treatment center for teens ages 12-17 in Colorado. Fire Mountain Residential Treatment Center was in 2019 named one of the Top 50 Healthcare Providers in the United States and in 2020 named one of the Top 100 Innovators in Healthcare.Find him on Facebook at “Parenting Teens That Struggle” for a TON of free information and advice._________________________________Connect with Aaron: https://www.facebook.com/groups/parentingteensthatstruggle________________________________This Episode was Edited by: Ruwan Basnayake________________________________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 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 show (https://www.patron.com/findyourrare)
35:49 12/21/2021
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 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 years and as a result, was the Co-Founder and Chief Motivating Officer of GradusOne, an organization to help high school/post-secondary and recent graduates in their life and career. More recently, after a successful few years, GradusOne merged with the League of Innovators (LOI) and he now is an advisor to LOI. Added to this, Sam is an accomplished speaker and storyteller. Either as a mentor/coach to a single student or speaking to hundreds as a keynote speaker, he shares his experiences through storytelling and has helped thousands in the pursuit of their dreams. he has just recently released his latest book called, ‘Lost and Found: Seeking the Past and Finding Myself’, where he went in search of his ancestral roots and discovered himself. Amazon.ca In 2011, Sam delivered a TEDxSFU speech about ‘Discovering the Extraordinary in the Ordinary’. This then led to a published book on personal storytelling and helping the reader build their story-voice – https://www.lulu.com/shop/search.ep?keyWords=sam+thiara&type=. He is now writing his next book about his adventures to India to find his ancestral roots and in the process, better understand his identity.Prior to SFU, Sam was part of the Vancouver 2010 Olympic Bid Committee and ICBC road safety where it was about about community building. With 45 + volunteer organizations that Sam has been involved with from the board, advisory to volunteer level, he has dedicated countless hours to his communities. Presently, he is working with multiple organizations such as the SFU Alumni Association, Shanti Uganda, Room to Read and many more.Sam consistently strives to discover the extraordinary in the ordinary and his journey is documented at Sams50-50.com. His favorite saying and what he lives by: “Everyone’s life is an autobiography…make yours worth reading!”Connect with SamWebsite – http://sam-thiara.comBook - http://sam-thiara.com/mywriting/Linked In - https://www.linkedin.com/in/sthiara/Instagram - https://www.instagram.com/samthiara/Twitter- https://twitter.com/notificationsFacebook - https://www.facebook.com/sam.thiara.siteThe 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 show (https://www.patron.com/findyourrare)
38:07 12/14/2021
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 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 mission to give parents space to talk about the hardship, while also recognizing that they love their child so much. Pain and love and exist at the same time!____________________________Connect with Amanda:@amanda.griffith.atkinswww.amandaatkinschicago.com___________________________This episodes was 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 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 show (https://www.patron.com/findyourrare)
30:40 12/07/2021
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 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 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 show (https://www.patron.com/findyourrare)
22:36 12/05/2021
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 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.facebook.com/heatherhutchisonmusicInstagram: @heatherhutchisonmusicTwitter: @hlhutchisonYoutube: www.youtube.com/hhutchisonmusic____________________________________________________________________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 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 show (https://www.patron.com/findyourrare)
25:17 11/30/2021
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 channelshttps://www.findyourrare.comThe 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 show (https://www.patron.com/findyourrare)
27:37 11/25/2021
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 advocating for better support for patients and physicians.She serves on the board of directors of the Northeast Ohio Crohn's & Colitis Foundation, is a support group facilitator and also volunteers on the national Crohn's & Colitis Foundation's Patient Advisory Task Force.Imagine the collective power if every person with a chronic illness spoke candidly about how mental and emotional health affects their physical symptoms.I was diagnosed with an autoimmune disease at a young age and spent many years trying to hide from and deny the fear, anger, and sadness I felt because of my illness. I recently published a book called "Chronic" about how a serious health scare in my late twenties caused me to reevaluate and change her focus to wellness and self-love rather than illness and fear.Through raw and personal stories and insights, I share my journey of living with and befriending my less-than-glamorous, often times invisible, chronic illness called Crohn's disease.These insights include:How women insist they’re “fine” even when they aren’t.Why physicians should consistently discuss mental health with their patients.What the power of radical acceptance and self-love can provide.Chronic encourages readers to shift their perspective of chronic illness from one of shame or fear to one of acceptance and love. Throughout her book, I give readers reasons to feel empowered and to know they are not alone.Connect with Christine:Instagram: @christinerich_authorWebsite: www.christinemrich.comAmazon: https://www.amazon.com/Chronic-Christine-M-Rich/dp/1636764827/ref=sr_1_1?dchild=1&keywords=chronic+christine+rich&qid=1633886322&sr=8-1________________________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 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 show (https://www.patron.com/findyourrare)
39:34 11/23/2021
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 brain misfires pain signals. After extensive physical rehab and finding the right medication, Theresa went into remission. But at the same time, she had developed another rare condition called Gastroparesis. This means she has a partially paralyzed stomach and cannot digest food properly. After two years of numerous hospital admissions and many tests, Theresa’s care team decided the best option was to place a surgical G/J feeding tube so she could alleviate nausea while also getting proper nutrition. Theresa has a very complicated relationship with her tube, but she is grateful for what it does for her body. If you’d like to connect with her, she can be reached on Instagram and Twitter @ReeseLove21 or emailed at tco@findyourrare.com.____________________________________________________________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 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 show
10:49 11/02/2021
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 which changed her and her family's lives forever. Now at just 20 years old, Leeya has found a passion for advocacy. I am always in awe of the young advocates in this rare space and I am so confident in the work they will do to bring the invisible visible. ____________________________________________________Meet Leeya:I am an honest person who at 20 years old has been through a lot in 4 1/2 years. At 15 years old, I went down the path to find out what was wrong. A lot of friends did not understand what I was going through and sometimes still do not.Mental struggles are true and I also deal with neuropathic pain on top of the condition.Diagnosed with Generalized Lymphatic Anomaly (GLA) at 15 years old during the first semester of sophomore year of high school. Since then, my family and I have been on a crazy but rewarding journey. Rewarding in the fact that we all love advocating and I have found a deep passion in wanting to pursue a career in hospital administration.Learned and have gone through many things which have led to some “friends” coming and going. That’s also a learning experience of who you want in your life.____________________________________________________Connect with Leeya:Instagram - @leeyas.storyGo to www.lgdalliance.org for further information about patients like me with these complex lymphatic anomalies.__________________________________________________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 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 show
31:02 10/26/2021
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 is going to be a great episode, so let’s dive in_________________________________________________________________________________________________Tri Bourne is a professional beach volleyball player, former professional indoor player and NCAA Division 1 Men's Volleyball player for the USC Trojans. He has been a part of the United States indoor and beach national teams since 2005. He was born on the Hawaiian island of Oahu, where he grew up. Tri's journey has been truly RARE.  In 2016 the onset of a rare disease came and took Tri out of the game for nearly two years. Determined to make his dreams come true Tri fought back and found himself at the Toyko 2020 Olympics. Meet Tri Bourne:I’m a beach vball professional. I got an autoimmune disease back in 2017 which kept me out for 2 seasons. I later came back, after making the most of my time off, and made the Olympic team…. Find more information at my website www.tribourne.netLearn More about Tri Myositis Journey___________________________________________________________________Connect with Tri:FB: tribourne IG:@tribourne YouTube channel:  Tri Bourne ________________________________________________________________This episode is sponsored by :Consolidoc - www.consolidoc.com The 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 show (https://www.patron.com/findyourrare)
74:11 10/18/2021
INTERVIEW: Barby Ingles, The Cheerleader of Hope
Meet Barby Ingles:I was living my dream. I trained and performed cheerleading, dance and gymnastics starting at age 4 through college. Straight out of college I started my own cheer/dance training company. A year later I was hired by Washington State University as the head spirit program coach. I have been battling chronic pain since 1997. First with Endometriosis which resulted in a full hysterectomy and left oophorectomy. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), is a progressive neuro-autoimmune condition that affects multiple system in the body and needs to be treated early so that disability does not take over and TMJ. I lost my physical abilities was bed bound for years. Using a wheelchair to get to get out of bed. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. I know firsthand how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you are saying could actually be what you’re experiencing. As I search for a cure, I have become my own best advocate and work sharing the information so that others do not have the same life struggles that I have. Even after seeing over 100 healthcare professionals, having major surgeries I didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation and so much more – I did not give up or give in! I advocate for all of us challenged with a chronic care condition involving chronic pain as well as their family, caregivers, healthcare professionals and public. One in three people (116 million)  in the United States are affected with a condition that causes pain, so it is bound to affect you or someone you know. But until you feel the pain it is difficult to understand all of the challenges it brings on. Whether physical or mental, pain can and will consume you if you allow it to and only the patient can begin the process of healing! My hope is that my speaking engagements and books will inspire your eventual transformation filled with HOPE and motivation.About Ipain:iPain Foundations objectives are reached through important educational events, support, resources, and enhancement projects that are funded through private donations and grants. The Power of Pain Foundation (dba: International Pain Foundation) demonstrates its commitment to the chronic pain community by promoting new knowledge in the cause and treatment of chronic pain conditions. The ultimate goal is to provide tools and life skills to chronic pain patients giving them the ability to perform their regular activities in the community and to bolster society’s ability to provide full opportunities and appropriate supports. Supporting education for pain patients, family members, caregivers and medical professionals, we make an important contribution to the overall knowledge and treatment of chronic pain. This allows our foundation to affect the lives of millions of people with chronic pain worldwide. Whether you have pain or are a caregiver, family member or friend of someone diagnosed, we’ll help you face the challenges and life changes of chronic pain, head on.Connect With Barby : https://ipaThe 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 show
60:23 10/12/2021
INTERVIEW: Joe Bullok & Stage 3B Colorectal Cancer
I am a survivor of stage 3b colorectal cancer. I was diagnosed in May 2018 after a routine colonoscopy. I have been NED since February of 2019. Trevor Maxwell a stage IV CRC patient who created Manuptocancer.com ask me to help him create The Howling Place Group on Facebook. We have grown to 1100 men strong in 16 months. The goal is to help men not to self isolate themselves during cancer diagnosis and treatment. to also support them during survivorshipStage 3b colorectal cancer survivor Durham, N.C.I was diagnosed in May of 2018 with stage3b Colorectal Cancer after a routine Colonoscopy at age 50. I had symptoms for a few months but had ignored them for several months following the death of both my parents in 2017 within a six-month period. During the Colonoscopy, my GI doctor found two polyps and a 1Ocm tumor in my colon. I had surgery to remove the tumor, reconnect my colon, and had 40 lymph nodes removed. Three of those tested positive for cancer. After surgery i underwent treatment with two forms of chemotherapy, Oxaliplatin infusions and Xeloda pills for 8 cycles or six months. In February 2019 I became known as NED (No Evidence of Disease) or cancer-free.Over the last few months, I have been working on finding my voice in the cancer community. I have begun living by the mantra " Cancer might be done with me but I'm not done with cancer." I have looked to other men in the cancer community who have made strides in this area and followed their examples. The following are my current roles of advocacy in the cancer community.*** January 2020 Lead Administrator for the Men's Cancer Facebook support group 'Man Up To Cancer/ The Howling Place' . It's a part of manuptocancer.com *** February 2020 I became a 'Card Angel' for Chemo Angels***April 2020 I became a contributor to manuptocancer.com as a blogger for ' Joe's Wolfpack Trailblazers' . A blog about the works of service and the daily lives of the men of The Howling Place. ***June 2020 I became an Ambassador for Fight CRC 2021 *** October 2020 I became an Empowered Patient Leader for Colontown.org***December 2020 Created 'Colontown Junior' with the help of Colontown.org to support the families of children diagnosed with pediatric colorectal cancer.I am married to my wife Michelle Bullock for 29 years. We live in Durham, N.C. with our two children._____________________Connect with Joe:_____________________twitter @jbullock114https://www.facebook.com/joe.bullock.7792instagram jbullock114manuptocancer.comwww.facebook.com/groups/manuptocancer/______________________________________________________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 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 show
55:03 09/25/2021
INTERVIEW: Golara Haghtalab & Immigrant: Courage Required
Hey, Peeps welcome to this bonus episode of because we are strong. Today I am so excited to introduce you to an up-and-coming author who I happened to have stumbled upon while strolling on Instagram. Golara author of Immigrant courage required. The invisible challenges of the estimated 272 million international migrants is a topic that needs to be brought to light now more than ever._____________________________________________________________________Purchase a copy of Immigrant: Courage RequiredBarnes and Nobels: https://www.barnesandnoble.com/w/immigrant-golara-haghtalab/1140101131?ean=9781636764979Amazon: https://www.amazon.com/Immigrant-Courage-Required-Golara-Haghtalab-ebook/dp/B09DTJLLQF/ref=cm_cr_arp_d_product_top?ie=UTF8Connect with Golara:Instagram: @g_o_l_a_r_aInquiry email: bookimmigrant@gmail.com_____________________________________________________________________This podcast was 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 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 show (https://www.patron.com/findyourrare)
22:12 09/25/2021
INTERVIEW: Fez Awan & His Three Kidneys
Show Notes:Hey peeps! Welcome back to another episode of Because We Are Strong. Today we are sitting down with a very special guest from the UK who has been nominated for a we go health award this year and is a fierce advocate. Fez has had 3 kidney transplants but continues to fight not only for himself but for others through mentoring and his work as an organ donation ambassador.Connect with Fez:___________________________________________________________________________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 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 show
52:09 09/21/2021
INTERVIEW: D-REK & The Angel Warriors
Meet D-RekDerek Canas (AKA D-REK), born a sweet, cute, seemingly healthy baby, had everything going for him until the age of 3 months, when he was surrounded by many doctors talking about transposition of the great arteries, pacemakers, and blood transfusions. His parents now had, what they called a “battery operated son”. This was a scary scenario for his parents with so many touch-and-go moments. 16-years later another illness that Derek had been living with started to show symptoms: HIV. This only brought on a more terrifying roller-coaster ride. With courage, unconditional love and sheer determination, Derek was not going to let any one of his health issues get in the way of his dream of becoming a DJ! Spinning music is the passion of his soul. Today, taking his fight against HIV to new hope, He can be found on WEGO health as a patient leader. A survivor of both open heart surgery and HIV, his doctors refer to him as "The Terminator." And that he is!! He is also the creator of the #EndTheStigma Campaign and D-REK's Angels and Warriors. On the weekends he turns into the crazy DJ – living his dreams!!Connect with D-RekTwitter:DJDREK84Facebook: EndTheStigma912Youtube : EndTheStigma912Instagram : Dreksangelsandwarriors____________________________________________________________________________The 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 show (https://www.patron.com/findyourrare)
44:18 09/14/2021