Nikki is immersed in the world of spinal muscular atrophy, rare disease, and special needs and has become a fierce advocate for these communities. Nikki has spearheaded various charitable events reaching families, sponsors, and donors, to raise funds for medical research. She has spoken in front of live groups of hundreds of people to share her family’s story and promote the need for further medical research and funding. Nikki, her son Miles, and the McIntosh family have been interviewed and fea...
Feb 23, 2021•43 min•Season 2Ep. 38
Hey peeps were back for another week of Because We are Strong, where through other peoples stories we try to raise awareness and bridge the gap between rare disease & chronic illness and the rest of the world. This week we are sitting down with Lindsay - a mother of 3 year old twins Logan and Luna. Ever since birth her son Logan has had issues and started therapy at 6 months of age. He has several diagnoses as well as a variant of unknown significance on the USP9X gene. We are excited to sit...
Feb 20, 2021•24 min•Season 2Ep. 37
Our rare disease story began in 2014 when Marcus was diagnosed with a neurological disease known as Trigeminal Neuralgia. Running has proven to be a positive outlet while we continue to navigate the difficult world of rare diseases. We founded SeeRareRun in 2019 to combine our passion for running with our desire to spread positivity to others in the rare disease community. Links are below: Website: https://www.seerarerun.org/ Direct link to sign up for our race: https://runsignup.com/Race/NC/Cha...
Feb 18, 2021•38 min•Season 2Ep. 36
Tonight we are sitting down with a mother who was faced with an incredibly difficult decision and one that didn't come without criticism. When Ivorie Nicole became pregnant with her little girl River she was over the moon. The feeling of excitement and joy quickly halted when she received the news that her daughter had bilateral renal agenesis. Bilateral Renal Agenesis is the absence of both kidneys at birth. It is a genetic disorder characterized by a failure of the kidneys to develop. We hope ...
Feb 16, 2021•40 min•Season 2Ep. 35
In Loving Memory Of Oliver Collins 1993-2021 "A zebra earned his wings; fly free Ollie" Welcome back to another episode of Because We are Strong, where we attempt to bridge the gap between the rare disease and chronic illness community and the rest of the world. Today we are chatting with Oliver, a disability advocate and a 27-year-old lawyer from Australia who hopes to show people that having a disability shouldn’t hold you back from achieving anything you set your mind to. Connect with Oliver:...
Feb 09, 2021•50 min•Season 2Ep. 33
This special rare disease day minisode is featuring Stephanie Cherry. My name is Stephanie Cherry and I am a native of Fairfield, Ca. I have two younger sisters, a fiancée, and almost two-year-old son. I’ve been working for the Solano County Sheriff’s Office for approximately 9 years. For the agency, I worked as a Correctional Officer for over 4 years and as a Deputy for going on 5 years. I started writing poetry as a young child which turned into me writing and performing music. My overall goal...
Feb 04, 2021•20 min•Season 2Ep. 32
Meet Lacey ! A sister to two siblings with their own unique set of needs and a fierce advocate for rare disease and inclusivity. Lacey uses her voice and her determination to try and make the world a better place for every rare fighter out there. 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...
Feb 03, 2021•17 min•Season 2Ep. 34
Were sitting down again this week to chat and listen to Brooke's story. Brooke is a mother to two children, one of which has a rare disorder called PKU. PKU is an inherited metabolic disease affecting the brain through increased levels of a substance called phenylalanine (Phe) in the blood. PKU infants in the US are diagnosed in the first few days of life through the federally mandated newborn screening program. This is important because the damage caused by toxic levels of Phe in the first few ...
Jan 26, 2021•44 min•Season 2Ep. 30
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...
Jan 22, 2021•45 min•Season 2Ep. 31
Hey Peeps ! it's Kristine and I'm flying solo tonight; however, this disease is one that hits both tt and I very deeply. so I am super excited to sit down with veronica. Veronica has been a chronic illness warrior for over 15 years. She has been battling Crohn's disease for 15 years. Crohn’s disease is a type of inflammatory bowel disease. It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss, and malnutrition. Crohn’s disease and...
Jan 19, 2021•49 min•Season 2Ep. 29
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...
Jan 07, 2021•34 min•Season 2Ep. 25
Taylor Kane is a 22-year-old rare disease advocate and founder of Remember The Girls, an organization dedicated to women with X-linked disorders. Taylor is passionate about fighting gender bias in healthcare, especially for women with rare conditions. Connect with Taylor: PURCHASE YOUR COPY OF RARE LIKE US! Taylors 2 minute rare disease challenge: https://www.youtube.com/watch?app=desktop&v=5DET6Alw3bA&feature=youtu.be Instagram/Twitter: @rarelikeher / @rarelikeusbooks taylorkane.com Rem...
Jan 05, 2021•45 min•Season 2Ep. 28
Hey peeps! Theresa couldn't make it this week so You're stuck with me! Don't get too excited! This week I am sitting down with Autumn who has five children. 4 boys and 1 girl. Her daughter Story Grace is legally blind and deaf and is unable to walk, talk, or eat by mouth. Autumn uses hiking as a way of bonding with her children as well as therapy but she found it difficult to hike as well as bring along everything needed for her daughter. Her daughter is tube fed and the blended food for her fee...
Jan 05, 2021•42 min•Season 1Ep. 27
Whitney is a digital marketing and technology consultant and founder of The Pink Zebra Club. She has 3 children who she loves fiercely: a spunky toddler at home and two beautiful children in heaven. When her first daughter Olivia was born with a severe and life-limiting neuromuscular disease, she began speaking openly online about her family’s journey with undiagnosed rare disease, child loss, and living through grief. Since then, she has walked through pregnancy after loss, parenting after loss...
Dec 29, 2020•1 hr 16 min•Season 1Ep. 17
Connect with us: findyourrare.com @findyourrare @largerthanbws @thatrare.girl 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...
Dec 26, 2020•31 min•Season 1Ep. 22
BabbleOnBrooke is an Inspirational Speaker, Biz + Life Coach, and Invisible Disabilities Advocate who combines her entertainment background and 9-year spinal injury recovery journey, "From Hollywood To Housebound To Healing" to empower others. Follow Brooke on any social media, including Instagram, Twitter, Facebook and Tik Tok @BabbleOnBrooke! www.BabbleOnBrooke.com BabbleOnBrooke is an Inspirational Speaker, Biz + Life Coach, and Invisible Disabilities Advocate who combines her entertainment b...
Dec 22, 2020•1 hr 5 min•Season 1Ep. 24
About Pamela Award Show Executive Producer | Journalist | Competitive Athlete | Dance Teacher Mentored by PR/Media mogul Michele Elyzabeth, Pamela Price is the Vice President of LATF USA, a daily lifestyle/entertainment news site, as well as the Executive Producer of the acclaimed annual award show, the Hollywood Beauty Awards, known as the ‘Oscars of Beauty’ and the Daytime Beauty Awards, which celebrates ‘Science behind Beauty.’ From the office to the outdoors, Pamela is a competitive trail ru...
Dec 16, 2020•33 min•Season 1Ep. 23
Stephanie was born with Cystic Fibrosis, a genetic disease that primarily leads to irreparable damage of the lungs. In spite of the considerable challenges, Stephanie continued her successful career as a designer all while being a devoted wife and loving mother. Unfortunately, CF started to have a greater impact on her life, forcing her to leave her career so that she could focus on her health. Through much introspection and painful self-acceptance, Stephanie made the courageous decision to begi...
Dec 08, 2020•54 min•Season 1Ep. 21
My name is Terry Pirovolakis and on April 2nd my life changed forever. My son Michael was diagnosed with a terrible neurodegenerative disease that will take away his ability to use his limbs and mind. My goal is to cure my son and as many children as I can of this terrible disease. Connect with Terry: @cure_spg50 on Instagram Help the cause: https://CureSPG50.org https://ca.gofundme.com/f/cure-michael-curespg50-spg50 You can also help our Cure SPG50 by shopping at RARE. and choosing Cure SPG50 a...
Dec 01, 2020•45 min•Season 1Ep. 20
2020 a year no one could have predicted. One we honestly weren’t sure how to be thankful for. But once we sat down and thought about it we realized despite the ridiculousness of 2020, without it we wouldn’t have accomplished some of what we have. Sometimes it’s important to acknowledge and be thankful for the struggles. After all, they can get you to where you are ultimately headed but it’s okay to acknowledge that it sucks along the way! Happy Thanksgiving and thank you for being here >> ...
Nov 26, 2020•15 min•Season 1Ep. 19
DISABILITY 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...
Nov 24, 2020•1 hr 2 min•Season 1Ep. 18
Hey 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 right ...
Nov 20, 2020•41 min•Season 1Ep. 17
We 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 exc...
Nov 17, 2020•41 min•Season 1Ep. 16
Jessica 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 her b...
Nov 10, 2020•44 min•Season 1Ep. 15
Sometimes 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 Than BWS ...
Nov 06, 2020•10 min•Season 1Ep. 14
November 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 the t...
Nov 04, 2020•38 min•Season 1Ep. 13
Jacob 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 and fi...
Oct 27, 2020•35 min•Season 1Ep. 12
Kierra 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 the loo...
Oct 20, 2020•40 min•Season 1Ep. 11
Rare 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 really cool...
Oct 13, 2020•36 min•Season 1Ep. 9
You 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 here tod...
Oct 10, 2020•8 min•Season 1Ep. 10
