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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.
20 Episodes
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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/Support 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)
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 33777Check Out RARE.Support the show (https://www.patron.com/findyourrare)
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 today to tell all you zebras out there who are home with me living day today, you are not alone. "Support the show (https://www.patron.com/findyourrare)
SURPRISE. 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.comCheck out their youtube channel https://m.youtube.com/channel/UCWHlZrG0_YXZX-8IZvZKINgSupport the show (https://www.patron.com/findyourrare)
We 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._________________________Support THAP12 >> https://findyourrare.com/collections/rare-aware-apparel/products/copy-of-greater-than-chronic-pain-t-shirtConnect with Mariah and Lighting & Love FoundationFoundation Website: www.lightningandlove.orgGoFundMe: gf.me/u/yqhc2kFoundation Instagram: https://www.instagram.com/lightningandlove/Foundation Facebook:https://www.facebook.com/lightningandloveIntroduction Video: https://www.youtube.com/watch?v=5WyVp2dTR9cSupport the show (https://www.patron.com/findyourrare)
INTERVIEW: Brooke Norton

INTERVIEW: Brooke Norton

2020-09-2901:02:37

Hey 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 sharing your families story with us today!While reading your blog and Evan’s story it reminded me a lot of Kristine’s story with her diagnosis. From what I read Evan has a gene mutation but because it is so rare they have no official name for it. Can you explain a little bit about Evan and his gene mutation and how you came about to getting his diagnosis?With Evan’s rare disease - what does a typical day look like for you and your family? What extra care does he need?Can you share for those listening to what some of the most frustrating aspects are of Evan’s condition?How do you cope with having a child with additional needs?Because Evan’s mutation is genetic what are the chances of you having another child like him?Do you ever have situations with strangers where you need to educate them on Evan?We really want to touch on Your Blog Everyday Evan - can you share a little bit about that and what you are hoping to accomplish with it?Since starting your blog, what impact have you noticed it has made on your family as well as other rare disease-fighters?What is next when it comes to Evan and your blog? Myeverydayevan.com We want to thank you so much for coming on and sharing Evan’s story. Often times that decision to let the world into your home is a big and difficult one. The internet and those behind keyboards aren’t always kind. Sharing your child takes true strength and if you didn’t the world would know even less about children like him. You and your family are incredibly inspiring. Support the show (https://www.patron.com/findyourrare)
This 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 provides fashionable and accessible shoes for all ages, making his brand the front runner for the rare disease and chronic illness community.To grab your pair of Billy Footwear shoes head over to https://billyfootwear.comSupport the show (https://www.patron.com/findyourrare)
INTERVIEW: Amber

INTERVIEW: Amber

2020-09-1539:22

September 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. Support the show (https://www.patron.com/findyourrare)
A 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. Continue to acknowledge the effects and open up the conversation. Keep the conversation alive, so we always remember and continue never to forget, because we are strong.Support the show (https://www.patron.com/findyourrare)
This 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 forever without being polite enough to ask for permission. That’s the thing though right? You don’t get a say with a rare disease. You don’t get to choose. But maybe that’s a good thing. Because if I got to choose beforehand I wouldn’t have one of the biggest blessings God has ever given me. This was a choice I’m grateful I didn’t get to make. Two and a half years ago our lives changed forever. I gave birth to Owen. My 12 pound chunky as all hell blessing. A boy whose life flipped ours upside down. Owen was born with Beckwith Wiedemann syndrome a disease I knew nothing about and had never heard, along with pretty much the rest of the world. Many of you here are Beckwith families who I am incredibly thankful for. But for the ones here that aren’t, I’ll give you a quick rundown of what bws is. Let me add my famous disclaimer. I am not a doctor but a mother on a mission. A mission to learn as much as I can about my son's disease, raise awareness in the process, and connect with anyone I can. BWS is an overgrowth disorder that affects Owens rate of growth. Hence why I gave birth to a toddler! One of the risks of BWS is an increased risk of developing childhood cancer. and as September is childhood cancer awareness month it seems pretty fitting to share Owens's story. Owen is screened with abdominal ultrasounds and bloodwork every three months. There’s a lot of other aspects of this syndrome that affect Owen but for myself, this one is the hardest. This is the one that constantly has bws mothers on the edge of our seats. Some of us manage this unknown aspect better than others. For myself, I go in waves. Sometimes I am doing fine and then other times I really struggle. You go from having a clean cancer scan and being on top of the world to a feeling in the pit of your stomach I can’t quite put into words. It’s a constant roller coaster of emotions. Not to mention the stress the scans bring. We try and make them as fun as we can but Owen hates the bloodwork. He fights like hell and begs me to rescue him. Nothing hurts your heart more as a mother than hearing your child beg you to help him while your the one helping to hold him down. That’s a trauma that sticks with you as a mother. Support the show (https://www.patron.com/findyourrare)
This 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.Support the show (https://www.patron.com/findyourrare)
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