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Because We Are Strong

Author: Theresa Thomas & Kristine Hoestermann

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Welcome to the because we are a strong podcast. A podcast inspired by stories of struggle and strength. A place where you can feel safe enough to share every part of your rare story. The good, the bad, the happy, and anything in between. Many times those in the rare disease community feel isolated from the rest of the world. rare disease comes with its own set of unique challenges, ones that are hard for the outside world to understand. Through our stories, we can bridge the gap between a lack of knowledge and understanding. Your story has the potential to touch and reach those who can relate and who otherwise feel alone. Together through our struggles, we can show our strength.
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RARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
RARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
 Hi! My name is Melody Olander and I’m the founder of the community and non-profit “But You Don’t Look Sick.” This community started by sharing my own story living with CIDP, POTS and EDS. I hope by sharing my story it helps someone feel less alone. Connect with Melody: Website: www.butudontlooksick.comInsta: @butyoudontlooksickofficialPodcast: Real Talk With MelodyRARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
Jenifer Tharani, MS RD (Registered Dietitian)Jenifer Tharani has completed master’s in human nutrition from Texas State University,San Marcos TX and training in dietetics from Emory University Hospital, Atlanta, GA. She isa member of College of Dietitians of Ontario and registered with the Commission of DieteticRegistration.She is multilingual and fluently speaks second languages like Hindi and has worked indifferent settings which has given her experience treating people of all ages with differentconditions. Jenifer believes that eating healthy does not have to be boring, time consumingor expensive. She is extremely passionate about helping you adopt an anti-inflammatoryeating pattern without restrictions. She doesn’t believe in diets, instead in making smallsustainable lifestyle changes to help you find a balance in your everyday life, includingtrying to keep your favorite foods in the mix! Jenifer’s mantra is “Give a Man a Fish, and YouFeed Him for a Day. Teach a Man to Fish, and You Feed Him for a Lifetime” and so she givesyou a nutrition toolbox to help manage your health condition or live a healthy and goodquality life, whatever your goal may be.About Jenifer's Virtual Nutrition Coaching Services In today's technologically driven world, Jenifer provides virtual nutrition coaching to helpyou take charge of your health from the comfort of your home. In her virtual nutritionpractice, she focuses on helping clients adopt a non-restrictive, gut healing anti-inflammatory eating pattern to help with weight loss, prevent and manage chronic illnesslike diabetes and autoimmune conditions like rheumatoid and osteoarthritis, fibromyalgia,lupus, psoriatic arthritis, and IBD.Social MediaInstagram: @chronicpain.nutritionistClubhouse: @autoimmune.rdFree Facebook Community: Nourish to Flourish Anti-inflammatory Nutrition & LifestyleCommunity - https://www.facebook.com/groups/nourishtoflourishkandjRARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
This episode is in loving honor to Aidan John LeVine 2016-2020Hey Peeps! Welcome back for another episode of Because We are Strong. This week we are sitting down with Brenna. Brenna is the mother of two boys, 1 in heaven and one still here on earth. Brenna's son Aiden had nonverbal autism & dyspraxia who passed away from a rare internal hernia that doesn’t have a name. She is using her voice and platforms to raise awareness for grieving mothers so that no other parent has to go through what she did.Meet Brenna:I am a grieving mom 2 boys, 1 in heaven 1 on earth. I'm just trying to navigate through life after losing the love of mine. since this rare internal hernia took my son so unexpectedly I would like to just share his story, bc no parent/child deserves thisin memory of Aidan John LeVine 2016-2020Aidan had nonverbal autism & dyspraxia. He passed away from a rare internal hernia that doesn't have a name. & Im just trying to figure out what happened to my baby & how to catch it, so no parent has to feel this pain that my husband and I feel all. the. time.RARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
 I am a 20 year old with a rare neuromuscular diesease called Friedreich's Ataxia. I have a tough life being wheelchair bound and lining with this disability, but I am still just a typical young adult who loves makeup and fashion!Please provide any links or notes you would like listed in the show notes of your episode.:TikTok- sydnidupreInstagram- sydnindupreYoutube- Sydni DupreRARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
Hey Peeps ! We're back again for another real and raw episode of Because We are strong. This week we are sitting down with Terri, a mother of two. Her children Claire and Josef both have CLN2 Batten Disease. CLN2 is an inherited disease that is passed down through families that primarily affects the nervous system. Children with CLN2 are born with this condition, however, signs and symptoms typically begin between ages 2 and 4.Connect with Terri @cureforclaireCureforclaire.comRARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
We are back for another Because We are Strong episode this week.  We are chatting with Morgan, the mother of a rare disease fighter and a mom on a mission to raise awareness about her daughter's condition. Morgans daughter Addison has Lamellar Ichthyosis, a rare genetic skin disorder that is present at birth and occurs in about 1 in 200,000 people.  Support Addison & FIRST with these limited edition tees ➡️https://findyourrare.com/collections/rare-aware-apparel/products/we-dont-sweat-it-short-sleeve-unisex-t-shirtRARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
#KC4K Advisory BoardWe are committed to being kid driven & lead; while adult monitored & guided. Our youth advisory board is dedicated to creating self-awareness of an individual’s own abilities and power to be able to make a positive impact on the world through the pillars of Leadership, Compassion, Commitment, and Contribution (LCCC). Our program is designed to help our youth develop lifelong leadership skills, cultivate compassion and commitment, teach them to personally contribute to the betterment of society. By instilling these skills and values in our youth at a young age, we are creating a lifelong imprint that positively impacts the world.  RARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
This week on Because We Are Strong we are sitting down with Avalon & Deb the mother-daughter duo who started the Avalon Foundation._________________________________________________________________________________Living with a rare disease has shaped who I am and what I am passionateabout. It has given me the opportunity to build my own resilience andstrength of character while discovering my passion for philanthropy andadvocacy. I am inspired by the ability to affect another person’s life in adeeply meaningful way. I am equally inspired by the chance to fight forequity and opportunity when I see injustice in the world. I feel honored tohave had so much support in creating and growing an organization thatgives so many young people the ability to serve others through leadership.The “leaders of tomorrow” are making a difference TODAY!I look forward to pursuing a law degree and continuing my journey ofadvocating for others as a life path.  RARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
This week on because we are strong we sat down with Jake Mayer a lyme warrior who took his journey and created change for himself and his community.I’ve endured over 13 years of Chronic Illness while living a fulfilled life. Not only have I shown people it’s possible to live life in the face of Lyme Disease, but I’ve dedicated myself to helping them do the same. That’s why I started a coaching business to help people regain control of their life and wellness.People with Chronic Lyme Disease feel they’re living, but not alive. They’re confronted with immense challenges including (but not limited to):Symptom managementPractitioners and protocol selectionInsufficient support and understandingA concern they’ll never get wellBecause of these challenges, people battling the disease experience physical and mental pain and can barely get out of bed or do simple tasks. These people are terrified they’re missing out on life… but I will not let this happen.Jake Mayers Coaching (JMC) launched to transform people. I coach people to use this struggle to their advantage, create happiness, and secure the support they deserve. This benefits every aspect of their life including symptom management, their relationships, and their goals, because they wake up feeling INVIGORATED, SUPPORTED, and CERTAIN they’re moving in the right direction.I’ve always had a deep drive to help others. But this journey instilled an obligation to do more than help, but to transform people’s lives. That’s what JMC is here to do. I couldn’t be more thrilled to share it with y’all!RARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
Meet Sarah and the Krieger Family:On February 9, 2017, our life was turned upside down when our youngest son Fritz, was diagnosed with Duchenne Muscular Dystrophy.  As we digested such devastating news, we found ourselves feeling weak and helpless. It was in those dark days of diagnosis, our community came alongside us and gave us strength. We experienced strength like no other, and it involved things like hugs, tears, prayers, hot meals, kind words, special notes; never physical muscle. In those extremely raw days of diagnosis, we realized that the word strength needed redefined. Inspired and uplifted, our family birthed and clung to the phrase, ‘Strength Is More Than Muscle™.’ A diagnosis of Duchenne does mean Fritz’s muscles will not work like they should, but we want him, and the world to know, that he can be strong, we can be strong, people can be strong because…. Connect with Sarah & Fritz & Friendshttp://fritzandfriendsdmd.orgRARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
Ella Balasa is a patient advocate and a person living with cystic fibrosis. Diagnosed at 18 months old, cystic fibrosis (or “CF”) is a life-limiting, invisible, chronic, and rare lung disease. Since early childhood, Ella has had countless hospitalizations to receive intravenous antibiotics to treat the lung infections that are the hallmark of the disease. These infections deteriorate the lung tissue over time, reducing function, and ultimately leading to failure requiring a double lung transplant to prolong life. Her disease is becoming visible as she requires using supplemental oxygen with physical activity. But despite having 28% lung function, she’s never let it be her excuse.With an academic background in biology, Ella is an advocate for the development of novel therapies for the treatment of antibiotic-resistant infections. She has spoken publicly about the value of patient voice in research as well as her experience with phage therapy as a previous speaker at the FDA, the Milken Institute's Future of Health Summit, and other conferences.  She is deeply involved in the CF community through being a director of the US Adult CF Association, serving as a member of research committees for the CF Foundation, and through her passion for writing. Ella writes about her research experiences and introspectively about the hardships, yet triumph that comes with living with a chronic illness. Through these opportunities, she provides a scientific voice and hopes to encourage empowerment in patient communities. In her free time, Ella enjoys cooking, drawing, spending time with friends, and traveling when she can. To learn more about her work and experiences visit, www.ellabalasa.com.Below are links you can include:Website: www.ellabalasa.comInstagram Handle:  @thisgirlellaTwitter: @ellabalasa1RARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
This week we have a fun lighthearted episode to share with you, but one that is necessary in this community. This week we are sitting down with Dr. Fynan, a licensed mental health counselor with a phd in clinical sexology ! Michelle is passionate about supporting singles in shifting their mindset around dating, sex, and relationships, especially if the disability is present. Meet Dr. Fryan>>I’m a clinical sexologist who is passionate about supporting singles in shifting their mindset around dating, sex, and relationships, especially if the disability is present. My hope is that this episode will water a seed of hope in people around finding love.  Connect with me here for a free consulation: www.drfynan.comRARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
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 featured in various newspapers and magazines, and their rare-disease journey has been highlighted in several documentary films.Nikki has represented the rare-disease parent voice to various biotech companies. Through interviews, podcasts, speaking, and writing, she sheds light on the challenges parents face while raising children with a rare disease. Nikki is the founder and creator of Rare Mamas, a resource and community to support rare disease mothers. ____________________________Connect with Nikki:E-Mail: nikki@raremamas.com @rare_mamas Rare MamasFor speaking, press, or partnerships contact: media@raremamas.comRARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
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 down with Lindsay and hear her share their story. ____________RARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
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/ChapelHill/seerarerun5kInstagram: https://www.instagram.com/seerarerun/(Handle is @seerarerun)RARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
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 you brought your tissues for this one ! RARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
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:https://www.instagram.com/imolliecollins/https://twitter.com/imolliecollins?lang=enCheck out Oliver's blog: https://imolliecollins.comRARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
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 with my writings/music has always been to be powerful, impactful, and influential. Being popular has never really been a goal of mine. Connect with Stephanie:Instagram: @thesexy_0neTiktok: @thesexy0neRARE.WE ARE A BRAND WITH A PURPOSE.Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com Support the show (https://www.patron.com/findyourrare)
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