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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.
30 Episodes
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 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 years of life is irreversible. Brooke is here with us today to not only share her story and educate others but to raise awareness for PKU and to be that person that mothers of other newly diagnosed children can turn to.Support the show (https://www.patron.com/findyourrare)
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 the way it affects people is different for everyone, so we are excited to sit down with Veronica and get her story. I have been an invisible illness victim, survivor, and warrior for the last 15+ years (exactly half of my life). I went through the ups and downs of Crohn’s Disease, as it reeked havoc on my body and mind in a major way.Connect with Veronica:@crohns_queen  I am always interested to connect with and meet fellow invisible illness warriors.Support the show (https://www.patron.com/findyourrare)
Support the show (https://www.patron.com/findyourrare)
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.beInstagram/Twitter: @rarelikeher / @rarelikeusbookstaylorkane.comRemember the Girls:https://www.rememberthegirls.org/Support the show (https://www.patron.com/findyourrare)
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 feeding tube was too heavy to pack. So she created her own solution. Autumn is the founder and sole creator of Wholestory Meals and we can't wait for you to learn all about her daughter and her much-needed solution for tube-fed children. I'm your host Kristine so let's Dive in!Connect with Autumn & Whole Story Meals:_________________________________________________www.wholestorymeals.com@wholestorymealsSupport the show (https://www.patron.com/findyourrare)
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, and repeat child loss, when her son Rory died from the same disease in 2019.Through her honest conversations online, and the work of The Pink Zebra Club, Whitney hopes to provide practical support and hope to other grieving parents.You can get involved with The Pink Zebra Club here (http://thepinkzebraclub.com/), and learn more about Whitney by following along via Instagram: (https://www.instagram.com/whitneyprior)Support the show (https://www.patron.com/findyourrare)
Connect with us:findyourrare.com@findyourrare@largerthanbws@thatrare.girlSupport the show (https://www.patron.com/findyourrare)
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.comBabbleOnBrooke 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. Her injury severely impacted her breathing and speaking, and threatened her life, yet here she is, babbling on. She kept going and encourages you to do the same. You are not alone and as she always says, "When you wake up breathing, it's a good day!" Follow her online for more and sign up for her e-mail list at www.BabbleOnBrooke.com to receive free Monthly Mindset Tips + Tools that will help you on your way.As listeners of the Because We Are Strong podcast, receive 50% off her upcoming online training, "How To Survive - and THRIVE! - In Isolation" with code RARE. Join her e-mail list at www.BabbleOnBrooke.com for more information.Support the show (https://www.patron.com/findyourrare)
About PamelaAward Show Executive Producer | Journalist | Competitive Athlete | Dance TeacherMentored 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 runner, obstacle course athlete and American Ninja Warrior. THE PRODUCER | JOURNALISTAt LATF, she directs story assignments, runs content management, social media, conducts celebrity interviews, and oversees the creative process/design of the news site and magazine. She writes film reviews, fitness tips, gear/apparel must-haves and race highlights. As an award show producer, Pamela runs talent booking, board and award roster correspondence, as well as oversees the show's production with Founder, Michele Elyzabeth and President, Otis Stokes. THE ATHLETE | DANCE TEACHERA formally trained dancer, Pamela began her dance training at the Portland Ballet Company in Maine before studying contemporary and Luigi jazz, while simultaneously running track & field, as well as cross-country; specializing in hurdles and long distance.She taught dance in New York City and ran the dance department for YMCA’s “Strong Kids Campaign” as well as their after-school hip-hop classes for youth and teens. Choreographing for musicals including “Cabaret” and “Pippin” at French Woods Festival of the Performing Arts, Pamela served as co-head of their dance department and taught contemporary & hip-hop at East Hollywood’s Dance Refuge. She has choreographed for music videos, including Kaneholler’s “Lite Brite” single and the early days of Justine Marino & Heidi Heaslet’s “Funny Dance Show,” which now airs on E!. Pamela was scouted for Season 11 of American Ninja Warrior. She competed at the Los Angeles Regionals at Universal Studios. Throughout the year, she competes in trail and obstacle course races; representing her Pro Race Team, HARDKOUR PERFORMANCE under the direction of Coach Justin Nucum. Pamela’s top competitive results include: 1st Place - Spartan Trail Race (AG*) - Lebec, CA - 2019 1st Place - Valenca Trail Race - 2019 1st Place - Tougher Mudder - Glen Helen Raceway - 2019 1st Place - Spacerock Trail Race - 2019 3rd Place - USA OCR National Championships / Spartan (AG) - 2018 ___________________________________Connect with Pamela:https://www.instagram.com/pamdrenaline/https://www.pamelaprice.com @wecarewhenSupport the show (https://www.patron.com/findyourrare)
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 begin sharing her story, reaching thousands through her platform and has made profoundly impactful changes on the lives of others living with CF. After a battle with an unrelenting pneumonia in 2019, Stephanie learned of a new "miracle medicine" that became available in the US. Unfortunately, this drug is not available in Canada, but this did not deter Stephanie. Stephanie was interviewed by local and national news stations; she reached out to her local members of government and even wrote to each executive of the pharmaceutical company. All that effort paid off when she learned that she was granted Compassionate Care by the manufacturer in January 2020, literally saving her life. Through unwavering faith and tireless effort, Stephanie was able to make her dreams a reality.After this personal victory, Stephanie continued her advocacy work to help other CF patients fight for their right to breathe. Together with 3 CF patients that were fighting for their lives and the parent of a CF patient, Stephanie co-founded the volunteer advocacy group called CF Get Loud. The team’s mission is to elevate patients' stories; empowering them to use their voices and educate families on the barriers that are blocking the accessibility of innovative medicine. Today, the movement has over 4300 members and is growing. Together, they continue to fight to save the lives of 4400 Canadians. ____________Connect with Stephanie@rosielifewithgrey@cfgetloudwww.cfgetloud.comdgL76H07Hi2k9C26NcM4Support the show (https://www.patron.com/findyourrare)
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 InstagramHelp the cause:https://CureSPG50.orghttps://ca.gofundme.com/f/cure-michael-curespg50-spg50You can also help our Cure SPG50 by shopping at RARE. and choosing Cure SPG50 at check out or shopping our Greater Than SPG50 Tee. >>> https://findyourrare.info/spg50 Support the show (https://www.patron.com/findyourrare)
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 >> xo -those RARE. girls_______________________________________________________________Our season of sleigh starts at 6pm tonight be sure to text "findyourrare" to 33777 for exclusive deals, prizes, and much more!https://www.findyourrare.comSupport the show (https://www.patron.com/findyourrare)
DISABILITY IS A BADGE OF HONOR.Creating Strength and Empowerment for People with DisabilitiesErin 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 "disabled," is NOT is a bad word, but a badge of honor, a beautiful community, a culture. She has worked in the non-profit, governmental, and business sectors for over 10 years.The original concept of Claiming Disability, Inc. started as a collective partnership with her friend, Mollie Miller, who also has Cerebral Palsy and is a strong disabilities advocate. Although, Mollie has moved on the message of empowerment and acceptance in the disabled community continues to strive and grow.  Now, Claiming Disability, Inc is connected to over 3,000 disability advocates from around the world, including Jim Lebrecht and Nicole Newnhawn, the Directors/Executive Producers of Crip Camp. A groundbreaking summer camp galvanizes a group of teens with disabilities to help build a movement, forging a new path toward greater equality.Claiming Disability Inc wants to spread our messages of empowerment and compassion. We believe that a single action can make a difference in the community, and that shared experiences can greatly impact inclusion. Through advocacy and outreach activities, our team and our community of supporters work to embrace diversity and disability as an asset toward the greater good.CLAIMING DISABILITY INC AT A GLANCEHelping people find strength and courage to celebrate disability_______________________________________________________________Connect with ErinInstagram@claiming_disability_inc FacebookWebsite: https://www.claimingdisabilityinc.org/Podcast: https://open.spotify.com/show/2Yn4fadpSRth3tRTRkiLaHMerch: https://teespring.com/stores/claiming-disability-ink-2?page=1Films: https://www.youtube.com/watch?v=0U2uijKb5J8&ab_channel=EastersealsDisabilityFilmChallengeSponsored Partnerships: https://thatshandi.co/168Lyfwtjm06sEdvaCHPSupport the show (https://www.patron.com/findyourrare)
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 in and hear from someone who knows bestI advocated for my son for over nine months before he finally got his rare disease diagnosis. I want to create awareness of his disease but also teach people how important it is to be your child’s advocate and always push for answers.Connect With Orah:@orahlasko and also the USP7 (Hao-Fountan Syndrome) foundation website usp7.orgSupport the show (https://www.patron.com/findyourrare)
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 excited to bring the mother of one of them on our podcast to tell you all about it. We all know mommas know best!Effie Parks was born in the magical land of Montana, where she was raised with her 12 loving siblings.  After moving to Washington and marrying her husband, they were blessed with the birth of their son, Ford Canon Parks.  When she learned that Ford had been born with an extremely rare genetic condition – CTNNB1 syndrome – she dove into the world of advocacy.  Now, she is the host of her own podcast, Once Upon a Gene, where she speaks to others about their journey through life with a rare disease. _______________________________ Connect with Effie:https://www.instagram.com/onceuponagene.podcast/ https://twitter.com/OnceUponAGenehttps://www.facebook.com/groups/1877643259173346  https://www.linkedin.com/in/effie-parks-741013164/https://effieparks.com/Support the show (https://www.patron.com/findyourrare)
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 book. _____________________Connect with Jessica: Instagram: @jayletay and @behinddarkglasses Twitter: @jayletayFacebook www.facebook.com/TheWorldofOneRoom and www.facebook.com/AGirlBehindDarkGlassesWebsite: www.jaytay.co.ukOrder :A Girl Behind Dark Glasses https://www.amazon.com/A-Girl-Behind-Dark-Glasses/dp/B07GNW8PBS/ref=sr_1_1?dchild=1&keywords=a+girl+behind+dark+glasses&qid=1602886573&sr=8-1Pre-order: A Girl in One Room is https://www.hashtagpress.co.uk/product-page/a-girl-in-one-room-by-jessica-taylor-bearman-temp-cover(It will also be available at all good bookshops and Amazon)Support the show (https://www.patron.com/findyourrare)
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 Blog ---> https://www.largerthanbws.comSocial Media ---> @largerthanbwsSupport the show (https://www.patron.com/findyourrare)
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.Support the show (https://www.patron.com/findyourrare)
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 finally decided to see a doctor. After a series of tests, he was diagnosed with a rare, genetic condition known as Friedreich's Ataxia (FA). FA causes progressive damage to the cerebral cortex, causing difficulties in balance, coordination, and energy production, leading patients into a wheelchair and a shortened life expectancy.This diagnosis was an opportunity for Jacob to give up on his life and his faith. Instead, he chooses daily to make the most out of his situation. He uses his story and his art as a way to inspire others, helping them persevere through their challenges and find their purpose. He has spoken and shared his art for over 10,000 people and counting, and is now working on his first book. Aside from speaking, spoken word, and hip-hop, Jacob, better known as JT, runs a high school mentoring program in Minneapolis and coaches football and basketball. He has a Master's degree from Bethel Seminary, is married to his beautiful wife, Abigail Thompson, and together they are raising their son, Titus.Your trials aren’t meant to break you; they’re meant to make you. Keep on fighting and don’t quit. There is a purpose in your pain. Your struggle is meant to mold you into the person that you are meant to be. God has a plan for you!____________________________________________________________________Connect with JT:TEN20words.com FB and IG @TEN20wordsSupport the show (https://www.patron.com/findyourrare)
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 apps2. Unsubscribe from all pregnancy update emails3. Research postpartum mood disorders so you can be on the lookout for them What made you decide to create artwork of the children's families have lost?I started out just creating artwork for myself but the. People started asking me to make some for them too and it was helping them heal like it was for me What plans do you have for your artwork? What is next for you?I don’t think I’ll ever stop making the portraits even when I’m so stressed out I can’t sleep. The healing experience is so powerful and I have so much joy in providing that for people! I’d like to move towards starting a nonprofit to be able to provide even Moore care for these women What is one of your biggest accomplishments so far when it comes to what you are doing in this community?Helping raise awareness about miscarriage kits! The video I shared was able to reach over 2.1 million people and reading the comments made me even more confident in spreading the word! Women deserve closure in their loss ______________________Shop Kierra B Art:Website: https://kierrabutcher.com/Connect with Kierra:Instagram:https://www.instagram.com/kierra_b_art/Miscarriage Kit Video:https://www.instagram.com/reel/CFkdoeXBK0C/?igshid=1hatbb0nsmuae Support the show (https://www.patron.com/findyourrare)
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