Because We Are Strong
123 episodes - English - Latest episode: almost 2 years ago - ★★★★★ - 9 ratingsWelcome 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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Episodes
INTERVIEW: Erin Noon Kay & Claiming Disabilities
November 24, 2020 05:00 - 1 hour - 42.6 MBDISABILITY IS A BADGE OF HONOR. Creating Strength and Empowerment for People with Disabilities Erin Noon Kay is the CEO & Founder of Claiming Disability Inc. Erin identifies as a "fierce disabled entrepreneurial woman," with Cerebral Palsy. She uses a walker and wheelchair occasionally, but she believes it's "OK" to look disabled and is working hard to bring representation for disability in film and everyday culture through media projects and disability-related content. She believes "disabl...
INTERVIEW: Orah Lasko & Hao Fountain Syndrome
November 20, 2020 17:00 - 41 minutes - 28.5 MBHey peeps! It was just Kristine this episode and I am back this week again hosting solo but we have another great episode for you today as I have the pleasure of sitting down with Orah Lasko who is the mother of Luke; Luke has a rare genetic disorder syndrome called Hao Fountain syndrome. As with to many of these rare genetic disorders Jake is among the ultra-rare with only 73 older cases known in the world. As you all know there is so much that goes into being a rare family so let's dive ri...
INTERVIEW: Effie Parks & Once Upon A Gene
November 17, 2020 05:00 - 41 minutes - 28.3 MBWe are back with another episode of Because we Are strong. Today we are sitting down with Effie, the mother of a rare disease warrior and a woman determined to make a difference. Effie has created her own podcast called Once upon a Gene, in honor of her son Ford who was born with a rare genetic disease called CTNNB1 syndrome. Many genetic syndromes such as CTNNB1 syndrome vary in their severity. There are only about 200 known people in the world who have CTNNB1 syndrome. We could not be more...
INTERVIEW: Jessica Taylor Bearman Author of A Girl Behind Dark Glasses
November 10, 2020 05:00 - 44 minutes - 30.4 MBJessica Taylor-Bearman is a bestselling author of the award-winning ‘A Girl Behind Dark Glasses’, which follows her journey as she goes from being a healthy teenager to fighting for her life in hospital with a very severe form of Myalgic Encephalomyelitis. She spent over a decade being completely bedridden and had to relearn how to speak, move, and eat. She always wanted to be an author and all the time she could not communicate properly, she kept a diary called Bug which she used to write h...
Minisode: Toxic Positivity
November 06, 2020 16:00 - 10 minutes - 7.17 MBSometimes people feel they're being helpful when they shower your situation with positivity and while positivity in rare disease is necessary for survival there is such a thing as to is positivity. When you use positivity so much to the point that you are negating someone’s struggles and experiences, that’s when it becomes toxic and not helpful. We all can learn from each other and their struggles. It’s okay to acknowledge the hard parts of your journey. ________________________ Larger Tha...
INTERVIEW: Carrie Hoestermann & Being A Caretaker
November 04, 2020 16:00 - 38 minutes - 26.5 MBNovember is caregiver awareness month. Being a caregiver to someone who is chronically ill is taxing and tiring and thankless. This week we sat down with Carrie, Kristine’s wife, to get her to take on life as a caretaker. She shares her experience of watching her best friend and love of her life get sick and how she manages a caretaker role as well as the role of a spouse. The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control ...
INTERVIEW: Jacob Thompson & TEN20words
October 27, 2020 04:00 - 34 minutes - 24 MBJacob Thompson (TEN20) has gone from diagnosis to destiny. His childhood dream was to be a professional athlete. He would tell you that, sometimes, our dreams for our lives need to die before we can live the true dreams and purpose that we were created for. He wouldn't only say this; he lives it every day. In his late teens, Jacob started having trouble performing athletically at a high level. Throughout college and after graduation he had not been feeling right physically for a long time a...
INTERVIEW: Kierra Butcher & Miscarriage
October 20, 2020 04:00 - 40 minutes - 27.6 MBKierra is a digital artist and blogger who is passionate about helping women navigate life after miscarriage and loss. Driven by her own experience with miscarriage (and lots of chips + salsa) she focuses on helping women not feel so alone in their journey. _______________________________ What are some tips you have for someone who experiences a miscarriage? 1. Delete all pregnancy apps 2. Unsubscribe from all pregnancy update emails 3. Research postpartum mood disorders so you can be on ...
Those RARE. Girls: Kristine's RARE.
October 13, 2020 04:00 - 35 minutes - 24.6 MBRare stories aren’t always easy to tell. Our brand may be black and white but rare stories usually aren’t. Today we are sitting down with Kristine, CEO of rare, my business partner, and close friend. She shares her journey with her rare disease and what life has been like for her. We discuss how as a community we can work alongside one another to create change and bridge the gap. Never Miss A RARE. Moment Text "FINDYOURRARE" to 33777 Check Out RARE. The CUBE and OOLER systems are two real...
Minisode: Travel RARE.ly
October 10, 2020 22:00 - 8 minutes - 5.91 MBYou know that saying travel often?? Well, whoever read that must not have a RARE. disease more like travel RARE.ly. Jump into this minisode with Kristine as she talks about her personal disappointments with traveling and how she has managed. "I am pretty good at managing my expectations and moving on with the universe but it's definitely harder during times like this weekend when many have a long weekend and I know Carrie and I would be doing had I not gotten sick so I guess I'm just on h...
Chronically Chatty: Em, Kate & Two Being Healthy
October 08, 2020 04:00 - 54 minutes - 37.5 MBSURPRISE. We are back again this week with a new episode of Because We Are Strong and this is definitely not one to miss. . We sat down with two amazing women who happen to not only share the same rare conditions, apartment, and blog but they are also sisters! Connect with Em & Kate on Instagram @twobeinghealthy Visit their website and see all the amazing resources they have over there at www.twobeinghealthy.com Check out their youtube channel https://m.youtube.com/channel/UCWHlZrG0_YXZX...
CHRONICALLY CHATTY: Em, Kate & Two Being Healthy
October 08, 2020 04:00 - 51 minutes - 35.8 MBSURPRISE. We are back again this week with a new episode of Because We Are Strong and this is definitely not one to miss. . We sat down with two amazing women who happen to not only share the same rare conditions, apartment, and blog but they are also sisters! Connect with Em & Kate on Instagram @twobeinghealthy Visit their website and see all the amazing resources they have over there at www.twobeinghealthy.com Check out their youtube channel https://m.youtube.com/channel/UCWHlZrG0_YXZX...
INTERVIEW: Mariah Gillaspie
October 06, 2020 04:00 - 39 minutes - 27.1 MBWe are back this week and we are chatting with Mariah. Mariah is the mother of Emma & Abby, two adorable little girls that are the only two known people in the world with their rare disease. The Gillaspie sisters share a mutation on one of their genes that causes seizures and severe developmental delays. Mariah started the non-profit Lightening and Love Foundation to raise awareness, advance scientific research, a find a cure for diseases caused from a mutation in the THAP12 gene. _________...
INTERVIEW: Brooke Norton
September 29, 2020 04:00 - 1 hour - 44.8 MBHey peeps ! I am back this week and we are chatting with Brooke. Brooke is the mother of Evan, a boy born with “designer genes”. He is only a handful of people worldwide with his particular genetic condition, related to gene RPL10. Brooke is also the creator of Everyday Evan, her families blog that is striving to provide hope, Joy, Education, and prayers for families who find themself in a similar situation. I’m you host Theresa, So lets dive in Welcome Brooke, thank you so much for sharin...
INTERVIEW: Billy Price & Billy Footwear
September 22, 2020 15:00 - 29 minutes - 20.5 MBThis week we sat down with Billy, the CEO of Billy Footwear to get his story and why he created his footwear line and what makes them so special for the rare disease community. As many people know Owen has Beckwith-Wiedemann syndrome as well as Hemihypertrophy. Hemihypertrophy is a rare disease that affects usually one side of someone’s body making it larger than the other which can present a major problem for people trying to find appropriate footwear. Billy has created a brand that provide...
INTERVIEW: OWNER OF BILLY FOOTWEAR // Billy Price
September 22, 2020 15:00 - 27 minutes - 18.8 MBThis week we sat down with Billy, the CEO of Billy Footwear to get his story and why he created his footwear line and what makes them so special for the rare disease community. As many people know Owen has Beckwith-Wiedemann syndrome as well as Hemihypertrophy. Hemihypertrophy is a rare disease that affects usually one side of someone’s body making it larger than the other which can present a major problem for people trying to find appropriate footwear. Billy has created a brand that provide...
INTERVIEW: Amber
September 15, 2020 04:00 - 41 minutes - 28.8 MBSeptember is childhood cancer awareness month, where we recognize the strongest cancer fighters there is. This week we sat down with Amber. The mother of Vivian. A 3 and a half-year-old BWS warrior and cancer fighter who is currently fighting stage 4 Wilms Tumor. She shares her story of managing cancer during COVID and the frustrations as well as the blessings that come along with it. The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use wate...
Minisode: 9.11.Never Forget.
September 11, 2020 15:00 - 9 minutes - 6.71 MBA day we will never forget through the eyes of my 6th-grade self. The world has been in a constant state of turmoil, and we sometimes forget the lasting impact it can have on children. Opening up the books I made for September 11 brought me right back to the classroom I was in when it happened. Reflecting on this day and remembering the effects it had on me is crucial to remember how events such as 9/11 or events in our own daily life with a rare diseases can affect the little ones around us...
BONUS: 9.11.Never Forget.
September 11, 2020 15:00 - 7 minutes - 4.99 MBA day we will never forget through the eyes of my 6th-grade self. The world has been in a constant state of turmoil, and we sometimes forget the lasting impact it can have on children. Opening up the books I made for September 11 brought me right back to the classroom I was in when it happened. Reflecting on this day and remembering the effects it had on me is crucial to remember how events such as 9/11 or events in our own daily life with a rare diseases can affect the little ones around us...
Minisode: When RARE. Found Me
September 08, 2020 17:00 - 10 minutes - 7.59 MBThis one might be a little difficult for me. As much as I put my family out there it doesn’t make sharing my story any less difficult. My story isn’t tragic. It’s not depressing. It actually is quite the opposite. Don’t get me wrong there are hard times, there’s a struggle, and loads of stress and uncertainties But among all the bullshit there are more blessings than I can count. I’ll be honest Rare disease never crossed my mind. Until it decided to stake a claim in my home and live there ...
Minisode: When RARE. Found Me
September 08, 2020 17:00 - 10 minutes - 7.59 MBThis one might be a little difficult for me. As much as I put my family out there it doesn’t make sharing my story any less difficult. My story isn’t tragic. It’s not depressing. It actually is quite the opposite. Don’t get me wrong there are hard times, there’s a struggle, and loads of stress and uncertainties But among all the bullshit there are more blessings than I can count. I’ll be honest Rare disease never crossed my mind. Until it decided to stake a claim in my home and live there ...
When RARE. Found Me
September 08, 2020 17:00 - 8 minutes - 5.87 MBThis one might be a little difficult for me. As much as I put my family out there it doesn’t make sharing my story any less difficult. My story isn’t tragic. It’s not depressing. It actually is quite the opposite. Don’t get me wrong there are hard times, there’s a struggle, and loads of stress and uncertainties But among all the bullshit there are more blessings than I can count. I’ll be honest Rare disease never crossed my mind. Until it decided to stake a claim in my home and live there ...
INTERVIEW: Angelia Samae McClellan
September 06, 2020 00:00 - 30 minutes - 21 MBThis week we are throwing it back to our very first episode we did via video with Angelia over a year ago! . Angelia is a BWS (Beckwith-Wiedemann syndrome ) mother who shares her unique struggles with her daughter. Her daughter does not show the more obvious BWS signs which can cause many children to go undiagnosed. Angelia hopes her story and experience can help other mothers find courage and strength to fearlessly advocate for their children every day. The CUBE and OOLER systems are two r...