Because We Are Strong: Recent Episodes
Kristine Hoestermann
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.
Today we are sitting down with Matthew Horsnell from TREND Community. TREND Community’s mission is to improve the quality of life for those living with rare and chronic diseases. They utilize technology to leverage social media to understand the disease burden. Let’s dive in!
____________________________________________This episode was produced and edited by :
Ruwan Basnayake
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This episode was sponsored by:
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
Meet Tori:
Tori is a congenital heart defect survivor and has undergone multiple open-heart surgeries and procedures throughout her life, including a life-changing visit to the ER where she narrowly escaped cardiac arrest and was defibrillated 3 times. Sharing her story of resilience and lessons for living victoriously, Tori is a bestselling author of the book, From Vulnerable to Victorious: Turning Your Chronic Illness Into Your Victory Story.
Growing up, she was an avid athlete, participating in volleyball, basketball, and track in high school. She went on to play volleyball at Corban University and later joined the track team at George Fox University as a high jumper.
With a heart for others affected by chronic illnesses such as CHD, Tori started a lifestyle blog where she shares lifestyle and chronic illness tips. Part of her mission is to have a “heart that beats for others.” Tori does this through her blog and chronic illness coaching program, where she coaches CHD warriors on creating a game plan to thrive with CHD and use their experiences for impact and purpose.
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Connect with Tori:
Learn more about the book here: https://www.amazon.com/dp/B09J43644Q/
Website: https://www.torijoygeiger.com/
Instagram: https://www.instagram.com/torijoygeiger/
Facebook: https://www.facebook.com/torijoygeiger
Discounted Ebook For RARE Listeners: https://www.torijoygeiger.com/ebookdiscount (Use Code RARE for 100% off the ebook download)
____________________________________________This episode was produced and edited by :
Ruwan Basnayake
___________________________________________
This episode is sponsored by:
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
*Your listening experience is extremely important to us with that being said please forgive Kristine's audio track. We apologize and will continue to work to improve your overall experience. Thank you for helping us bridge the gap between rare diseases and the rest of the world.
_____________________________________________*Meet Kenzi:
I had a positive pap in 2016, got a biopsy and found out it was stage 1 cancer. I was told I had HPV 16 and that’s what had caused my cancer. I Had a colposcopy, got it lasered & was good to go. I was supposed to have semi annual paps but didn’t go. I had 5 babies (two after the first diagnosis) and got wrapped up in life and never made Pap smears a priority. I didn’t know it was important.. I didn’t go get a Pap after my last daughter was born.
After four years of not getting a Pap smear, I went in in September 2020..i had a positive pap and dysplasia was found.
they did a colposcopy and biopsy. Staged me at 3b. I did a leep procedure. I went through two rounds of chemo (Carboplatin and paclitaxel) and internal/external radiation. And they took me back very quick to get a total hysterectomy. The next pet scan showed two of my pelvic lymph nodes were being effected.
So I had a second surgery.. I got para-aortic lymph nodes dissection. A week after that surgery I went to the hospital for pain and they found out I had an internal secondary hemorrhage. They did a surgery for packing and vault suturing. I also required a blood transfusion. (I’m anemic anyways) Following that I had surgery for a cuff tear that required a revision. After that I developed cuff cellulitis infection. I was hospitalized with Iv antibiotics. I got my last a pet scan in April 2021 and The surgeries were successful to get rid of the cancer. My scan was clear. I had to go in every 3 months for a check up scan (CT or PET) my husband got out of the military and we moved from California to Michigan to buy our first house. I set up my follow up appointment. It NEVER crossed my mind that the cancer could be back.. I was determined and had plans to live life cancer free. Due to my Covid symptoms they called me and read to me my results. I had a 5.6 cm tumor in my pelvic/abdominal wall cavity. Biopsy came back cancerous. I started chemo right away. They sent me to a surgeon. He took me back for my 6th surgery. Performed Debunking & small bowel resection. Tumor was removed en bloc, with 2 segments of small bowel. The surgeon anticipates 3-5 more surgeries. After that, I had went to the ER for breathing struggles and they had found a nodule on my left lung. I just got a biopsy recently and am waiting for my results. I also go talk to the surgeon next week to discuss more surgeries. In the meantime i have gotten Covid (for the second time) I’ve have had to wear a 24 hour heart rate monitor. I have severe vertigo and was passing out. After hitting my head numerous times, they Diagnosed me with post concussion syndrome. The dr found out why it was happening and diagnosed me with POTS..and I have a vitamin b 12, vitamin d, magnesium and potassium deficiency which I am taking medicine for now. I’m already anemic and have needed multiple blood infusions through the last couple years.
I’m just happy and thankful to be at home right now with my family instead of living in the hospital.
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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
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 (https://www.patron.com/findyourrare)
Meet Marie:
Marie Dagenaia-Lewis is a very pridefully disabled art activist, speaker, author and creator of the Chronically Spooky series, a coloring book inspired by Disability & Chronic Illness. On top of running her own business, she is the Content Manager at Diversability and the Social Media Manager at Omnium Circus. She spent almost a decade in the broadcast industry as a primetime television director until she was a victim of ableism. Now, she uses her art and storytelling to dismantle the ableist society.
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Connect with Marie:
Www.instagram.com/r.a.r.e.advoc8
Www.rarebymariedl.threadless.com
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This episode was edited by:
Ruwan Basnayake
________________________________________________
This episode is sponsored by:
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 (https://www.patron.com/findyourrare)
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 (https://www.patron.com/findyourrare)
Roxy ( aka Roxanne Channel ) Murray
Is a Multiple Sclerosis Warrior , Blogger, Podcaster , Fashion Stylist and MS Advocate.
She created her podcast @SickandSickening_Podcast
while trying to combat her own depression and isolation to navigate life with a chronic illness as a MS sufferer from a ethnic background .
Sharing real unfiltered stories from chronic , disability and invisible illness warriors to create better representation and a safe space for open conversations especially for black and brown people from around the world.
Her number one goal is to use her voice to demand inclusion and visibility for all. She does this by helping others empower themselves to embrace their mobility aids with style, grace and her hashtag #wearenotinvisible
Based in London
Roxy previously studied
Fashion Design , Styling and Promotion at Middlesex University London and went on to become a fashion stylist .
After being diagnosed with Multiple Sclerosis she could no longer work as a stylist but transferred her knowledge of fashion and styling to help herself and others embrace their disabilities, illnesses empowering others to embrace their mobility aids through her social media accounts .
She now works closely with multiple MS organisations to help create better representation and diversity for all but focusing on the black and queer narratives in hopes to work towards a better more diverse MS community that fully represents the full spectrum and diversity within it and possibly a cure .
Please include any social media handles and/or any direct links you would like us to include in your episode show notes.
@multiplesclerosisfashionista
@sickandsickening_podcast
@sickandsickening
https://youtube.com/channel/UCW01_3SIHVIic0PfiuDN5nQ
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 (https://www.patron.com/findyourrare)
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 (https://www.patron.com/findyourrare)
Rare Disease Data Trust is a new and innovative patient-centric diagnostic model that accelerates the discovery and diagnosis of lost rare disease patients, through direct collaboration with large provider groups and health systems, and compliant commercial sponsorship of targeted searches. To healthcare data owners, RDDT is a first to market innovative high-value, low-risk data commercialization model, serving the most vulnerable and underserved patient in healthcare – the rare disease patient. To Bio-pharma we are a newly discovered compliant pathway allowing commercially sponsored diagnostic searches against provider-owned electronic patient data. RDDT is the neutral market intermediary that operates within a regulatory safe harbor and can execute these powerful and important searches using world-class Artificial Intelligence and Machine Learning technology. Our mission is to end the rare disease diagnostic odyssey and accelerate the discovery and diagnosis of lost rare disease patients.
This episode was produced and edited by :
Ruwan Basnayake
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This episode is sponsored by:
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 (https://www.patron.com/findyourrare)
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At the age of six months, Dima Hendricks was diagnosed with Sickle Cell Anemia. In the face of adversity, Dima is determined to live a life filled with purpose. As a patient advocate and a Sickle Cell Heath Coach for the CARISMA study. Dima’s mission is to help other sickle cell warriors to live productive lives through the pain.
The ‘Unleashing Royalty’ author also has an extensive pageant resume. She won the titles of Miss Black Dorchester USA, Miss Black Massachusetts USA, and Mrs. Massachusetts International.
In 2018, Dima launched the #ThroughThePain brand. The podcast was later launched in 2020.
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Dima’s Links
www.DimaHendricks.com
Instagram @DimaHendricks
Dima’s Book
Unleashing Royalty: A R.O.Y.A.L Formula to Help You Walk into Queendom with Purpose.
www.UnleashingRoyalty.com
Available on:
Amazon https://amzn.to/3IJSi7n
Barnes & Noble https://bit.ly/3MnyLMa
ThroughThePain
Website: www.ThroughThePain.org
Merch: https://throughthepain.store/collections/all
Linktree: https://linktr.ee/ThroughThePainPodcast
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 (https://www.patron.com/findyourrare)
Meet Gigi Robinson:
I am a digital artist, health & wellness advocate, current M.S. Candidate, and graduate of the University of Southern California with a Bachelors in Fine Arts, Design, and Photography.
I have strong presences across Tik Tok (100k views on average) and Instagram (15.5k+ followers), and, as of this year, I have been developing my YouTube and Podcast content.
I have always been a creative innovator and possessed a high-level work ethic, especially when it comes to making a difference with my projects. Originally, I wanted to be a photographer, but, since then, have transitioned my skills of image-making into those that create an impact through storytelling. Living with chronic illnesses, I have been challenged in many ways with everyday tasks, such as showering, cooking, walking, and even sitting down.
Despite all of the physical and psychological challenges that threatened the path to becoming who I am today, I have challenged adversity and dedicated a majority of my life to becoming a master content creator, always keeping my values of creating positive and impactful messages to my diverse audience as a priority.
Content creation has been my passion since day 1 and I do not see that changing any time soon. I made a goal for 2021 to level up the impact my content has. Keep reading to see how I am taking steps toward that goal.
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Connect with Gigi: https://www.gigirobinson.com/social-1https://www.gigirobinson.com/contact **@itsgigirobinson
____________________________________________*This episode was produced and edited by :*
Ruwan Basnayake
___________________________________________
This episode is sponsored by:
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 (https://www.patron.com/findyourrare)
Meet Michaela:
Michaela G. Margida is one very smart cookie who has dedicated her life to acquiring and translating knowledge into meaningful actions that improve the world. She happens to be a Ph.D. scientist, and she is very proud of that, because she worked extremely hard for it! However, she is a human being first, and has worked hard to define her self-worth outside of her achievements. So here are some things about Michaela the human that you should know:
Michaela’s favorite quote was said by Anne Frank: “How wonderful it is that nobody need wait a single moment before starting to improve the world.” Michaela is a big believer that the world needs her now - not after she has lost ten pounds, gotten a personal record in the marathon, revamped her entire wardrobe, gotten a high-paying job, or whatever other metric the world is using to define success today - and that the best way to improve the world is by being her authentic self.
Her second favorite quote was said by her former boss, U.S. Senator Cory Booker: “Don't let your inability to do everything undermine your determination to do something.” It’s this attitude that inspired Michaela and her brother Gregory to start The Valentine Project in 2010, a 501(c)3 nonprofit that serves children affected by cancer or a chronic illness and their siblings. The Valentine Project works year-round toward the lofty goal of “making the world a kinder place, one child at a time” by recognizing the immense power that small acts of love have to create moments of hope and joy in a world that can sometimes feel very dark. Specifically, The Valentine Project sends personalized gifts to kids diagnosed with cancer or a chronic illness and their siblings each Valentine’s Day, and sends Kindness Cards to these special kids to continue cultivating compassion all year round.
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**Connect with Michaela:
The Valentine Project website: https://thevalentineproject.org/**
TVP Facebook: https://www.facebook.com/thevalentineprojectusa
TVP Instagram: https://www.instagram.com/the_valentine_project/
TVP Twitter: https://twitter.com/valentineproj
Michaela Facebook: https://www.facebook.com/michaela.gabrielle.cecilia/
Michaela Instagram: https://www.instagram.com/dr.michaelagabrielle/
Michaela LinkedIn: https://www.linkedin.com/in/michaelamargida/ **_______________________________________________
This episode was edited by:** Ruwan Basnayake
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This episode was sponsored by:
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 (https://www.patron.com/findyourrare)
**Hey Peeps! I’m your host Kristine and I’m flying solo! Today we are sitting down with Tami, founder of The Fibro Spot, an online shop dedicated to people with Fibromyalgia. Tami was diagnosed with Fibromyalgia herself in 2009 and I am sure we will have tons in common! Let’s dive in!
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This episode was edited by: Ruwan T. ____________________________________*This episode is sponsored by:*
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 (https://www.patron.com/findyourrare)
Meet Kristen:
Have you ever had the feeling that you’re off course? Or maybe that life is moving so fast that you don’t even have time to catch your breath, never mind check in with yourself? Without setting time and space to be with our inner world, the outer world takes over. However, when we establish and cultivate a daily centering practice, we learn to navigate the outer world with intention and attention.
I am a life coach, mindfulness teacher, podcast host, and author of Better Daily Mindfulness Habits. I help people live a more conscious, connected, and intentional life.
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Connect with Kristen:
https://www.instagram.com/kristenmanieri_/
https://www.facebook.com/60MindfulMinutes
https://www.kristenmanieri.com
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This episode was edited by: Ruwan Basnayake
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This Episode Is Sponsored by:
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 (https://www.patron.com/findyourrare)
For a Pharma company with an approved treatment for a rare disease, patient advocacy and community relations play an integral role in its expansion and progress. Without the support and trust of the rare disease community a pharmaceutical company cannot reach its patients, a reason why building and fostering strong relationships with the patient audience is absolutely critical. Amy Grover has been advocating, educating, and empowering the rare disease patient community for over 13 years. She stands at the helm of Catalysts’ patient outreach initiatives, making bonds stronger for a mutually beneficial existence. Amy partners with related patient organizations and assists in their efforts to help the patient community. She conducts patient advisory boards to ensure Catalyst is creating relevant and meaningful tools and resources to provide to patients. Amy regularly connects with the LEMS patient community to confirm that Catalyst is doing right by the community and living the mission of the company. While Amy is not entrenched in the research and development of life science products, her work is deeply connected to the rare disease space. It is her mission to create awareness for LEMS which is an ultra-rare disease where there hasn't been attention given to the community in the past. She understands the importance of her responsibilities as a liaison between her company and the patients.
Amy began her career in advocacy at Global Genes, a non-profit based in Southern California dedicated to serving the 350 million people affected by rare diseases globally. Amy is dedicated advocacy professional with 10 years of experience in educating over 500 small, medium, and large patient organizations on development and patient engagement. She managed the foundation alliance at Global Genes and offered counseling, tools, and resources. Through these efforts and educational opportunities, these organizations were able to grow and develop and excelled in finding and funding researchers, policy and legislation, capacity building, and community support.
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This episode:
• The importance of building community and connections in rare diseases.
• Why all stakeholders in rare diseases need to have open and honest communication.
• What does advocacy mean in rare diseases, and how can patients, parents, and caregivers fit into the advocacy role?
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Connect with Amy
@theamygrover
@CatalystForRare
https://www.linkedin.com/in/amy-grover-b7464429/
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This episode was edited by : Ruwan Basnayake
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This episode is sponsored by:
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 (https://www.patron.com/findyourrare)
Hey Peeps! It’s Kristine and I am flying solo! Today we are talking with Aaron Huey, the founder of Parenting Teens that Struggle and the host of the #1 parenting podcast Beyond Risk and Back. He is also a Parent Coach, teen addiction interventionist, a facilitator of powerful parenting events, and a happy husband and father to two adults. This episode is especially for all you parents out there, so let’s dive in!
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Meet Aaron:
Aaron is extremely ADHD.
Founder of “Parenting Teens that Struggle” and the Host of the #1 Parenting Podcast “Beyond Risk and Back” which is Mental Health News Radio Network's highest-rated show internationally. He is also a Parent Coach for parents of kids at risk, a teen addiction interventionist, facilitates powerful parenting events, and is a very happy husband and father of 2 young adults.
Aaron is an internationally known lecturer on archetypal imagery, body language, and martial arts and the Founder and President of Fire Mountain Programs, and since 2004 has run kids camps, teen camps, and family programming. In 2009, he and his wife Christine opened a residential Mental Health and Dependency recovery treatment center for teens ages 12-17 in Colorado. Fire Mountain Residential Treatment Center was in 2019 named one of the Top 50 Healthcare Providers in the United States and in 2020 named one of the Top 100 Innovators in Healthcare.
Find him on Facebook at “Parenting Teens That Struggle” for a TON of free information and advice.
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Connect with Aaron:
https://www.facebook.com/groups/parentingteensthatstruggle
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This Episode was Edited by:
Ruwan Basnayake________________________________
This episode is sponsored by:
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 (https://www.patron.com/findyourrare)
Through his tireless work, Sam continues to be committed to the betterment of communities. In 2016, Sam received the Governor General’s Sovereign’s Volunteer Medal as a past recipient of the Governor General’s Caring Canadian Award. Also, in 2012 he received the Queen’s Diamond Jubilee Medal and the Rick Hansen Difference Maker medallion. As a writer and blogger, his passion is to inspire and motivate others in their personal and professional development through his many adventures and reflections on life’s journey.
Sam has mentored hundreds and engaged with thousands of students and professionals over the last many years and as a result, was the Co-Founder and Chief Motivating Officer of GradusOne, an organization to help high school/post-secondary and recent graduates in their life and career. More recently, after a successful few years, GradusOne merged with the League of Innovators (LOI) and he now is an advisor to LOI. Added to this, Sam is an accomplished speaker and storyteller. Either as a mentor/coach to a single student or speaking to hundreds as a keynote speaker, he shares his experiences through storytelling and has helped thousands in the pursuit of their dreams. he has just recently released his latest book called, ‘Lost and Found: Seeking the Past and Finding Myself’, where he went in search of his ancestral roots and discovered himself. Amazon.ca In 2011, Sam delivered a TEDxSFU speech about ‘Discovering the Extraordinary in the Ordinary’. This then led to a published book on personal storytelling and helping the reader build their story-voice – https://www.lulu.com/shop/search.ep?keyWords=sam+thiara&type=. He is now writing his next book about his adventures to India to find his ancestral roots and in the process, better understand his identity.
Prior to SFU, Sam was part of the Vancouver 2010 Olympic Bid Committee and ICBC road safety where it was about about community building. With 45 + volunteer organizations that Sam has been involved with from the board, advisory to volunteer level, he has dedicated countless hours to his communities. Presently, he is working with multiple organizations such as the SFU Alumni Association, Shanti Uganda, Room to Read and many more.
Sam consistently strives to discover the extraordinary in the ordinary and his journey is documented at Sams50-50.com. His favorite saying and what he lives by: “Everyone’s life is an autobiography…make yours worth reading!”
Connect with Sam
Website – http://sam-thiara.com
Book - http://sam-thiara.com/mywriting/
Linked In - https://www.linkedin.com/in/sthiara/
Instagram - https://www.instagram.com/samthiara/
Twitter- https://twitter.com/notifications
Facebook - https://www.facebook.com/sam.thiara.site
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 (https://www.patron.com/findyourrare)
Hey peeps, this week I am so excited to sit down and chat with Amanda, not only is she a member of this RARE. herd but she is also a therapist.
Meet Amanda:
I'm a mom to a 12-year old with Prader-Willi Syndrome as well as a licensed marriage and family therapist.
My son got his diagnosis when he was 7 weeks old. It turned my life upside down and I quickly learned that there wasn't much space for the "hard" feelings related to parenting a child with a disability. It's become a bit of a life mission to give parents space to talk about the hardship, while also recognizing that they love their child so much. Pain and love and exist at the same time!
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Connect with Amanda:@amanda.griffith.atkins
www.amandaatkinschicago.com
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This episodes was sponsored by :
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 (https://www.patron.com/findyourrare)
**Hey Peeps welcome back to another episode of because we are strong this week we are sitting down with Riley who was diagnosed in utero as a spina beautiful. Riley is using her experience to move mountains and show others how powerful adaptive beauty really is. I'm your host Kristine so let's dive in.
______________________________________________**This episode is sponsored by:
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 (https://www.patron.com/findyourrare)
Meet Heather:
Heather Hutchison is an award-winning singer/songwriter and author of the new memoir, Holding On by Letting Go. She shares her story of life as a blind person both in Canada and Latin America, her struggles with anxiety and depression, the unique challenges of being hospitalized for psychiatric care during the COVID-19 pandemic, and the refuge she has always found in music. It is her story of choosing life.
Connect with Heather:
Website: www.heather-hutchison.com
Facebook: www.facebook.com/heatherhutchisonmusic
Instagram: @heatherhutchisonmusic
Twitter: @hlhutchison
Youtube: www.youtube.com/hhutchisonmusic
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This episode is sponsored by:
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 (https://www.patron.com/findyourrare)
Happy THANKSGIVING peeps! Join us as we go over a year to be grateful for.
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Connect with us:
@findyourrare
on all your favorite social media channels
https://www.findyourrare.com
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 (https://www.patron.com/findyourrare)
Christine Rich is an award-winning marketing executive, retired spin instructor, speaker, mentor, mama, advocate, and author.
She is passionate about raising awareness about the intersection of chronic illness and mental health and advocating for better support for patients and physicians.
She serves on the board of directors of the Northeast Ohio Crohn's & Colitis Foundation, is a support group facilitator and also volunteers on the national Crohn's & Colitis Foundation's Patient Advisory Task Force.
Imagine the collective power if every person with a chronic illness spoke candidly about how mental and emotional health affects their physical symptoms.
I was diagnosed with an autoimmune disease at a young age and spent many years trying to hide from and deny the fear, anger, and sadness I felt because of my illness. I recently published a book called "Chronic" about how a serious health scare in my late twenties caused me to reevaluate and change her focus to wellness and self-love rather than illness and fear.
Through raw and personal stories and insights, I share my journey of living with and befriending my less-than-glamorous, often times invisible, chronic illness called Crohn's disease.
These insights include:
How women insist they’re “fine” even when they aren’t.
Why physicians should consistently discuss mental health with their patients.
What the power of radical acceptance and self-love can provide.
Chronic encourages readers to shift their perspective of chronic illness from one of shame or fear to one of acceptance and love. Throughout her book, I give readers reasons to feel empowered and to know they are not alone.
Connect with Christine:
Instagram: @christinerich_author
Website: www.christinemrich.com
Amazon: https://www.amazon.com/Chronic-Christine-M-Rich/dp/1636764827/ref=sr_1_1?dchild=1&keywords=chronic+christine+rich&qid=1633886322&sr=8-1
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This Episode is sponsored by:
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 (https://www.patron.com/findyourrare)
Theresa (aka T.Co) is the marketing coordinator for RARE. Her journey in the RARE. world began in 2017 after an unfortunate accident with a camping chair. She developed a rare condition called Complex Regional Pain Syndrome (CRPS) where her brain misfires pain signals.
After extensive physical rehab and finding the right medication, Theresa went into remission. But at the same time, she had developed another rare condition called Gastroparesis. This means she has a partially paralyzed stomach and cannot digest food properly.
After two years of numerous hospital admissions and many tests, Theresa’s care team decided the best option was to place a surgical G/J feeding tube so she could alleviate nausea while also getting proper nutrition. Theresa has a very complicated relationship with her tube, but she is grateful for what it does for her body.
If you’d like to connect with her, she can be reached on Instagram and Twitter @ReeseLove21 or emailed at tco@findyourrare.com.
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This Episode is Sponsored by:
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 (https://www.patron.com/findyourrare)
Hey Peeps! Welcome back to another weekly episode of Because We are Strong! This week we are talking with Leeya, who was only 15 years old when she started down this rare journey. In her sophomore year, she was diagnosed56 with GLA which changed her and her family's lives forever. Now at just 20 years old, Leeya has found a passion for advocacy. I am always in awe of the young advocates in this rare space and I am so confident in the work they will do to bring the invisible visible.
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Meet Leeya:
I am an honest person who at 20 years old has been through a lot in 4 1/2 years. At 15 years old, I went down the path to find out what was wrong. A lot of friends did not understand what I was going through and sometimes still do not.
Mental struggles are true and I also deal with neuropathic pain on top of the condition.
Diagnosed with Generalized Lymphatic Anomaly (GLA) at 15 years old during the first semester of sophomore year of high school. Since then, my family and I have been on a crazy but rewarding journey. Rewarding in the fact that we all love advocating and I have found a deep passion in wanting to pursue a career in hospital administration.
Learned and have gone through many things which have led to some “friends” coming and going. That’s also a learning experience of who you want in your life.
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Connect with Leeya:
Instagram - @leeyas.story
Go to www.lgdalliance.org for further information about patients like me with these complex lymphatic anomalies.
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This episode is sponsored by :
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 (https://www.patron.com/findyourrare)
Hey Peeps! It’s Kristine and I am flying solo! Today we have a very special guest, Olympic volleyball player Tri Bourne! Not only is Tri an elite athlete, he also is a RARE. athlete, having been diagnosed with Dermatomyositis in 2016. This is going to be a great episode, so let’s dive in
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Tri Bourne is a professional beach volleyball player, former professional indoor player and NCAA Division 1 Men's Volleyball player for the USC Trojans. He has been a part of the United States indoor and beach national teams since 2005. He was born on the Hawaiian island of Oahu, where he grew up. Tri's journey has been truly RARE. In 2016 the onset of a rare disease came and took Tri out of the game for nearly two years. Determined to make his dreams come true Tri fought back and found himself at the Toyko 2020 Olympics.
Meet Tri Bourne:
I’m a beach vball professional. I got an autoimmune disease back in 2017 which kept me out for 2 seasons. I later came back, after making the most of my time off, and made the Olympic team…. Find more information at my website www.tribourne.net
Learn More about Tri Myositis Journey
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Connect with Tri:
FB: tribourne
IG:@tribourne
YouTube channel: Tri Bourne
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*This episode is sponsored by :
Consolidoc - www.consolidoc.com*
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 (https://www.patron.com/findyourrare)
Meet Barby Ingles:
I was living my dream. I trained and performed cheerleading, dance and gymnastics starting at age 4 through college. Straight out of college I started my own cheer/dance training company. A year later I was hired by Washington State University as the head spirit program coach. I have been battling chronic pain since 1997. First with Endometriosis which resulted in a full hysterectomy and left oophorectomy. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), is a progressive neuro-autoimmune condition that affects multiple system in the body and needs to be treated early so that disability does not take over and TMJ. I lost my physical abilities was bed bound for years. Using a wheelchair to get to get out of bed. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. I know firsthand how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you are saying could actually be what you’re experiencing. As I search for a cure, I have become my own best advocate and work sharing the information so that others do not have the same life struggles that I have. Even after seeing over 100 healthcare professionals, having major surgeries I didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation and so much more – I did not give up or give in!
I advocate for all of us challenged with a chronic care condition involving chronic pain as well as their family, caregivers, healthcare professionals and public. One in three people (116 million) in the United States are affected with a condition that causes pain, so it is bound to affect you or someone you know. But until you feel the pain it is difficult to understand all of the challenges it brings on. Whether physical or mental, pain can and will consume you if you allow it to and only the patient can begin the process of healing! My hope is that my speaking engagements and books will inspire your eventual transformation filled with HOPE and motivation.
About Ipain:
iPain Foundations objectives are reached through important educational events, support, resources, and enhancement projects that are funded through private donations and grants. The Power of Pain Foundation (dba: International Pain Foundation) demonstrates its commitment to the chronic pain community by promoting new knowledge in the cause and treatment of chronic pain conditions. The ultimate goal is to provide tools and life skills to chronic pain patients giving them the ability to perform their regular activities in the community and to bolster society’s ability to provide full opportunities and appropriate supports. Supporting education for pain patients, family members, caregivers and medical professionals, we make an important contribution to the overall knowledge and treatment of chronic pain. This allows our foundation to affect the lives of millions of people with chronic pain worldwide. Whether you have pain or are a caregiver, family member or friend of someone diagnosed, we’ll help you face the challenges and life changes of chronic pain, head on.
Connect With Barby :
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 (https://www.patron.com/findyourrare)
I am a survivor of stage 3b colorectal cancer. I was diagnosed in May 2018 after a routine colonoscopy. I have been NED since February of 2019. Trevor Maxwell a stage IV CRC patient who created Manuptocancer.com ask me to help him create The Howling Place Group on Facebook. We have grown to 1100 men strong in 16 months. The goal is to help men not to self isolate themselves during cancer diagnosis and treatment. to also support them during survivorship
Stage 3b colorectal cancer survivor Durham, N.C.
I was diagnosed in May of 2018 with stage3b Colorectal Cancer after a routine Colonoscopy at age 50. I had symptoms for a few months but had ignored them for several months following the death of both my parents in 2017 within a six-month period. During the Colonoscopy, my GI doctor found two polyps and a 1Ocm tumor in my colon. I had surgery to remove the tumor, reconnect my colon, and had 40 lymph nodes removed. Three of those tested positive for cancer. After surgery i underwent treatment with two forms of chemotherapy, Oxaliplatin infusions and Xeloda pills for 8 cycles or six months. In February 2019 I became known as NED (No Evidence of Disease) or cancer-free.
Over the last few months, I have been working on finding my voice in the cancer community. I have begun living by the mantra " Cancer might be done with me but I'm not done with cancer." I have looked to other men in the cancer community who have made strides in this area and followed their examples. The following are my current roles of advocacy in the cancer community.
*** January 2020 Lead Administrator for the Men's Cancer Facebook support group 'Man Up To Cancer/ The Howling Place' . It's a part of manuptocancer.com
*** February 2020 I became a 'Card Angel' for Chemo Angels
***April 2020 I became a contributor to manuptocancer.com as a blogger for ' Joe's Wolfpack Trailblazers' . A blog about the works of service and the daily lives of the men of The Howling Place.
***June 2020 I became an Ambassador for Fight CRC 2021
*** October 2020 I became an Empowered Patient Leader for Colontown.org
***December 2020 Created 'Colontown Junior' with the help of Colontown.org to support the families of children diagnosed with pediatric colorectal cancer.
I am married to my wife Michelle Bullock for 29 years. We live in Durham, N.C. with our two children.
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Connect with Joe:
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twitter @jbullock114
https://www.facebook.com/joe.bullock.7792
instagram jbullock114
manuptocancer.com
www.facebook.com/groups/manuptocancer/
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This episode is sponsored by:
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 (https://www.patron.com/findyourrare)
Hey, Peeps welcome to this bonus episode of because we are strong. Today I am so excited to introduce you to an up-and-coming author who I happened to have stumbled upon while strolling on Instagram. Golara author of Immigrant courage required. The invisible challenges of the estimated 272 million international migrants is a topic that needs to be brought to light now more than ever.
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Purchase a copy of Immigrant: Courage Required
Barnes and Nobels: https://www.barnesandnoble.com/w/immigrant-golara-haghtalab/1140101131?ean=9781636764979
Amazon: https://www.amazon.com/Immigrant-Courage-Required-Golara-Haghtalab-ebook/dp/B09DTJLLQF/ref=cm_cr_arp_d_product_top?ie=UTF8
Connect with Golara:
Instagram: @g_o_l_a_r_a
Inquiry email: bookimmigrant@gmail.com
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This podcast was sponsored by:
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 (https://www.patron.com/findyourrare)
Show Notes:Hey peeps! Welcome back to another episode of Because We Are Strong. Today we are sitting down with a very special guest from the UK who has been nominated for a we go health award this year and is a fierce advocate. Fez has had 3 kidney transplants but continues to fight not only for himself but for others through mentoring and his work as an organ donation ambassador.Connect with Fez: ___________________________________________________________________________
This Episode is Sponsored by:
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 (https://www.patron.com/findyourrare)
Meet D-Rek
Derek Canas (AKA D-REK), born a sweet, cute, seemingly healthy baby, had everything going for him until the age of 3 months, when he was surrounded by many doctors talking about transposition of the great arteries, pacemakers, and blood transfusions. His parents now had, what they called a “battery operated son”. This was a scary scenario for his parents with so many touch-and-go moments. 16-years later another illness that Derek had been living with started to show symptoms: HIV. This only brought on a more terrifying roller-coaster ride. With courage, unconditional love and sheer determination, Derek was not going to let any one of his health issues get in the way of his dream of becoming a DJ! Spinning music is the passion of his soul. Today, taking his fight against HIV to new hope, He can be found on WEGO health as a patient leader. A survivor of both open heart surgery and HIV, his doctors refer to him as "The Terminator." And that he is!! He is also the creator of the #EndTheStigma Campaign and D-REK's Angels and Warriors. On the weekends he turns into the crazy DJ – living his dreams!!
Connect with D-Rek
Twitter:DJDREK84
Facebook: EndTheStigma912
Youtube : EndTheStigma912
Instagram : Dreksangelsandwarriors
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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 (https://www.patron.com/findyourrare)
**Hey Peeps! Welcome back to another episode of the Because We are Strong Podcast, where we sit down every week to hear the untold stories of those in the rare disease and chronic illness community. This week we are sitting down with Seth, a rare disease fighter who founded Our Odyssey, a foundation that connects young adults who have rare diseases with emotional and social support.
Connect With Seth:
To learn more about Our Odyssey head to www.ourodyssey.org**
To learn more about WEGO Health head to www.wegohealth.com and sign up for your account today!People can follow me on Twitter/Instagram @srotberg15 _____________________________________________________
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 (https://www.patron.com/findyourrare)
Meet Charles:
I have battled Rheumatoid Arthritis since the age of 15, have my hip replaced/revised 3 times, and 2 years ago was diagnosed with Young Onset Parkinson's Disease (I am only 46 years old). I have had many other health struggles and currently seek to share with others that even in the face of all this, there is much to be thankful for and we can choose to have HOPE.
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 (https://www.patron.com/findyourrare)
Just a mamabear advocating and spreading awareness. Motivated by my daughter, driven by change
My journey is just beginning, but my mission will not be complete until treatment and/or a cure.
My daughter was born and diagnosed 8 months later with a rare disease called Jordan’s Syndrome. There are about 180 individuals worldwide diagnosed and the number is growing. It became my mission to help her beat the odds and work hard every day to get stronger.
While doing so, I too became stronger and learned that my voice, my actions, and my advocacy, can also help her and others in the rare disease world stand a fighting chance.
It all started one night when I found myself in bed, tears streaming down my face. The next thing I knew, I was writing it all down, which eventually became my blog. I started to feel a little less burderened by my fears and emotions, and a whole new world was opened up to me.
I am trying to spread awareness and raise money for Jordan’s Guardian Angels, my daughter, the challenges and struggles, the triumphs, and daily life.
My goal is to connect with others in the rare disease community, but also reach others outside of the rare disease world so they can better understand the daily struggles and fears that patients, caregivers, and community members face every day.
The more awareness that is out there, the better we can all work together for a common cause: scientific advancements, collaboration, better understanding, and inclusivity.
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Sponsors for this Episode:
“One quick thing I want to mention is a service I’ve started using called ConsoliDoc because I know some of my listeners may find it useful and I don’t want to forget. ConsoliDoc helps me collect and manage all of my medical information using one portal. Basically all you have to do is use your account to submit record requests, super easy and takes like 10 seconds each, and then they literally do the rest and now I can log into my account and access my complete medical history at any time. It's kind of game changing for me because I’ve wanted something like this for so long. Anyways, I don’t want to bore anyone but if you’re interested check them out at ConsoliDoc.com.”
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 (https://www.patron.com/findyourrare)
Hey peeps and welcome back to another episode of the Because We Are Strong podcast. Today we are sitting down with Jenny, a blogger and entrepreneur, who battles FAP and Short Bowel Syndrome. Jenny uses her platforms and shop to raise awareness and research funds.
One thing that Jenny wants our community to know: They are not alone in their rare disease or chronic illness and to feel empowered to advocate for themselves.
Connect with Jenny:
www.LifesaPolyp.com
www.Youtube.com/LifesaPolyp
www.CafePress.com/LifesaPolyp
Social Media: LifesaPolyp
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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 (https://www.patron.com/findyourrare)
Join Kristine and special guest host Michelle as they talk about community, competition and how we come together to make change.
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 (https://www.patron.com/findyourrare)
Meet Jessica Romero⬇️
My name is Jessica Romero I was born October 26, 1983 at Denver General Hospital in Denver, Colorado. I was born 3 months premature weighing one pound, 7 ounces. The Rocky Mountain News crowned me the “Miracle Baby of Colorado". Everything was developed except my lungs. I was born with a collapsed left lung in which i was diagnosed with Pulmonary Hypertension Disease in December 2010. PH is a type of blood pressure in the lungs Because of My disease and condition i remaines on oxygen my whole life. Imagine it this way having a paper or plastic bag over your head and trying to breathe, that is what it's like for me. My lungs are basically like swiss cheese. I have oxygen tanks by her side 24/7. I met kelly at Pulmonary Rehab kelly Frederick, she does In home Personal Trainer. At one point I Was no longer able to get myself to the pulmonary rehab class and that’s when I called on Kelly Frederick In-home personal trainer. She offered to come to my home for a 30 minute exercise session . Kelly put together a strategic exercise plan. She taught me proper form, sets ,Reps and breathing exercises while I’m at rest between sets. She also encouraged me to exercise on my own two times a week For 30min. Kelly also taught me about better eating habits. I agreed to follow through with my new exercise plan and a goals to set for a stronger me! I wear oxygen 24 seven at a level of 7 to 8 L depending on my activity, and My lung capacity is 15% lung function. My social life is very limited due to the fact that I have this health condition and My immune system is very weak and most of the time when I get sick with a cold I end up in the hospital. I’m on the double lung transplant waiting list at UCSF before I got on the transplant list I met kelly Fredrick at Pulmonary Rehab, she does In home Personal Trainer. At one point I Was no longer able to get myself to the pulmonary rehab class and that’s when I called on Kelly Frederick In-home personal trainer. She offered to come to my home for a 30 minute exercise session . Kelly put together a strategic exercise plan. She taught me proper form, sets ,Reps and breathing exercises while I’m at rest between sets. She also encouraged me to exercise on my own three times a week For 30min. I’ve been working out & exercising for 1 hour & 30 minutes for 4 years now since January of 2016.
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 (https://www.patron.com/findyourrare)
Patti + Ricky is the Adaptive Fashion Marketplace for adults and kids with disabilities, chronic conditions, patients, seniors, and caregivers.
Shopping does not typically include or embrace differences and individuals with disabilities. Patti + Ricky changes this with an inclusive shopping experience for all.
Patti Connell was a mother, sister, aunt, daughter, friend, and entrepreneur. She was strong, independent, and very much ahead of her time. Ricky Warga-Arias was a son, cousin, friend, philanthropist, and teacher. He had a contagious smile, keen intellect, and was a true lover of the arts. They were both the depiction of cool. Together, Patti and Ricky formed the inclusive lens through which Alex Herold (CEO and Founder of Patti + Ricky) sees the world. Alex wanted to create an online department store where every product is curated with Patti and Ricky's approval in mind. Our mission is to continue to spread the love, understanding, and acceptance that Patti + Ricky passed on throughout their lifetimes.
We hope Patti + Ricky continues to positively impact lives every day. Each year we donate 10% of our profits to non-profit organizations that support inclusion and provide access for individuals with disabilities and chronic conditions.
Thank you for shopping with Patti + Ricky!
Adaptive and functional fashion for people of all abilities. Click here to find out the inspiration behind PattiAndRicky.com and meet our CEO and Founder, Alexandra Herold.
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 (https://www.patron.com/findyourrare)
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 (https://www.patron.com/findyourrare)
This episode is in loving memory of Chrissy Grube
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 (https://www.patron.com/findyourrare)
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 (https://www.patron.com/findyourrare)
Welcome back to another episode of Because We Are strong. This week we are sitting down with Manisha, the Patient Doc and author of Butterflies, Boards and Blessings: A Doctor’s Journey to Thriving with Lupus.
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 (https://www.patron.com/findyourrare)
**Hey Peeps! Welcome back to another episode of the Because We Are Strong podcast ! Where every week we sit down with chronic illness warriors across the globe in the hopes that sharing their stories will help bridge the gap between rare diseases and the rest of the world. This week we are chatting with Felicia, a Mother, Wife, Book Nerd, Podcaster, Vasculitis Warrior and Chronic Illness Advocate. Through her struggles with her health, she has learned how important it is to keep going, to advocate for yourself.
Meet Felicia:**I'm a Mom, Wife, Book Nerd, Podcaster, Vasculitis Warrior and Chronic Illness Advocate. Through my struggles with my health ive learned how important it is to keep going, to advocate for yourself. and to find support in other rare disease warriors.
Connect With Felicia:Fight Like a Mama Podcast:
iTunes:https://podcasts.apple.com/us/podcast/fight-like-a-mama-podcast/id1530311551
Spotify: https://open.spotify.com/show/7kM7BD5AFBdfV8vbB6hmZV?si=VAafJPG7TViqtaXR9wQOFQ&utm_source=copy-link
Instagram: instagram.com/fightlikeamama
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.
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Welcome back for another episode of Because We are Strong. Today we are sitting down with Chardell, a registered dietician and mother of 3. One of Chardell’s children has Phelan-McDermid Syndrome (22q13 deletion). Currently, she is helping special needs parents take better care of their families with healthy eating.
Meet Chardell:
Chardell Buchanan is a Registered Dietitian and mom to three children, one of whom has Phelan-McDermid Syndrome or 22q13 Deletion. Currently, she is helping special needs parents take better care of their families with healthy eating.
www.chardellbuchanan.com
Instagram @stronger_for_ben
Facebook @ChardellBuchananNutrition
https://m.youtube.com/watch?v=95EOIpJNUTM
www.pmsf.org
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 (https://www.patron.com/findyourrare)
This week we are sitting down with Patti, a writer, book coach, rare disease advocate, and author of loving large, a mother's rare disease memoir.
Meet Patti:
I'm an author, writing coach, and publishing project manager, and a proud #memoiraholic. I adore non-fiction and especially the memoir and personal narrative genre.
I'm an architect of story. I help people design and build books. I love the way that books are constructed — their infrastructure begins from the scaffolding of an outline, chapter, scenes, backstory, and reflection. The thematic structure is revealed like specks of color; breadcrumbs for the reader to find their way to your conclusion.
I'm a magnet for the story. I was built for listening, cultivating memories, and tugging at tales. I'm that person you meet at a dinner party, between the shelves at the library or in the coffee shop line that you find yourself telling your history to.
I happen to have a Bachelor's and a Master's degree, and no they aren't in English lit creative writing. My education explains my appreciation for formal writing, and my many years of coaching aspiring university essay writers.
https://pattimhall.com/loving-large-book/
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 (https://www.patron.com/findyourrare)
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 (https://www.patron.com/findyourrare)
Hey Peeps! Welcome back for another episode of Because we are strong! Today we are sitting down with Autumn, who has a rare medical condition called UCD also known as UCD. Autumn is 28 years old and was diagnosed with UCD when she was a young infant.
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 (https://www.patron.com/findyourrare)
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 (https://www.patron.com/findyourrare)
This week on the BECAUSE WE ARE STRONG PODCAST we featured Gerry a mom and PHN warrior; meet Gerry
In 2018, I was diagnosed with Idiopathic Pulmonary Arterial Hypertension.
Since diagnosis, I have felt the draw to share my story so that you can find hope and inspiration from it. PH patients and chronic illness patients alike fight battles every day, some in complete silence. I am here to tell you that your story is a great story of battle and I hope I can encourage you every step of the way. Be it an ear to listen, a shoulder to cry or a fan, I'm here for you!
Being a pulmonary hypertension patient advocate has been a privilege and I look forward to hearing all your stories of war. Let's connect!
https://www.instagram.com/_gllangan/
https://www.gerrylangan.com/
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 (https://www.patron.com/findyourrare)
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 (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.com
Insta: @butyoudontlooksickofficial
Podcast: Real Talk With Melody
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.
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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 is
a member of College of Dietitians of Ontario and registered with the Commission of Dietetic
Registration.
She is multilingual and fluently speaks second languages like Hindi and has worked in
different settings which has given her experience treating people of all ages with different
conditions. Jenifer believes that eating healthy does not have to be boring, time consuming
or expensive. She is extremely passionate about helping you adopt an anti-inflammatory
eating pattern without restrictions. She doesn’t believe in diets, instead in making small
sustainable lifestyle changes to help you find a balance in your everyday life, including
trying to keep your favorite foods in the mix! Jenifer’s mantra is “Give a Man a Fish, and You
Feed Him for a Day. Teach a Man to Fish, and You Feed Him for a Lifetime” and so she gives
you a nutrition toolbox to help manage your health condition or live a healthy and good
quality 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 help
you take charge of your health from the comfort of your home. In her virtual nutrition
practice, she focuses on helping clients adopt a non-restrictive, gut healing anti-
inflammatory eating pattern to help with weight loss, prevent and manage chronic illness
like diabetes and autoimmune conditions like rheumatoid and osteoarthritis, fibromyalgia,
lupus, psoriatic arthritis, and IBD.
Social Media
Instagram: @chronicpain.nutritionist
Clubhouse: @autoimmune.rd
Free Facebook Community: Nourish to Flourish Anti-inflammatory Nutrition & Lifestyle
Community - https://www.facebook.com/groups/nourishtoflourishkandj
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 (https://www.patron.com/findyourrare)
This episode is in loving honor to Aidan John LeVine 2016-2020
Hey 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 this
in memory of Aidan John LeVine 2016-2020
Aidan 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.
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 (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- sydnidupre
Instagram- sydnindupre
Youtube- Sydni Dupre
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 (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 @cureforclaire
Cureforclaire.com
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 (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-shirt
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 (https://www.patron.com/findyourrare)
KC4K Advisory Board
We 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.
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.
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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 passionate
about. It has given me the opportunity to build my own resilience and
strength of character while discovering my passion for philanthropy and
advocacy. I am inspired by the ability to affect another person’s life in a
deeply meaningful way. I am equally inspired by the chance to fight for
equity and opportunity when I see injustice in the world. I feel honored to
have had so much support in creating and growing an organization that
gives 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 of
advocating for others as a life path.
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 (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 management
- Practitioners and protocol selection
- Insufficient support and understanding
- A concern they’ll never get well
Because 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!
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 (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 & Friends
http://fritzandfriendsdmd.org
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 (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.com
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 (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.com
Instagram Handle: @thisgirlella
Twitter: @ellabalasa1
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 (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 Mamas
For speaking, press, or partnerships contact: media@raremamas.com
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 (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.
____________**
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 (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/seerarerun5k
Instagram: https://www.instagram.com/seerarerun/
(Handle is @seerarerun)
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 (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 !
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 (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=en
Check out Oliver's blog: https://imolliecollins.com
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 (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_0ne
Tiktok: @thesexy0ne
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 (https://www.patron.com/findyourrare)
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, 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 (https://www.patron.com/findyourrare)
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.
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 (https://www.patron.com/findyourrare)
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 (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.
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 (https://www.patron.com/findyourrare)
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 (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.be
Instagram/Twitter: @rarelikeher / @rarelikeusbooks
taylorkane.com
Remember the Girls:
https://www.rememberthegirls.org/
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 (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
@wholestorymeals
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 (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)
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 (https://www.patron.com/findyourrare)
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 (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.com
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. 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.
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 (https://www.patron.com/findyourrare)
About PamelaAward 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 runner, obstacle course athlete and American Ninja Warrior.
THE PRODUCER | JOURNALIST
At 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 TEACHER
A 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
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Connect with Pamela:
https://www.instagram.com/pamdrenaline/
https://www.pamelaprice.com
@wecarewhen
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 (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
@cfgetloud
www.cfgetloud.com
dgL76H07Hi2k9C26NcM4
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 (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 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 at check out or shopping our Greater Than SPG50 Tee. >>> https://findyourrare.info/spg50
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 (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.com
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 (https://www.patron.com/findyourrare)
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 "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 GLANCE
Helping people find strength and courage to celebrate disability
_______________________________________________________________
Connect with Erin
Instagram
@claiming_disability_inc
Website: https://www.claimingdisabilityinc.org/
Podcast: https://open.spotify.com/show/2Yn4fadpSRth3tRTRkiLaH
Merch: https://teespring.com/stores/claiming-disability-ink-2?page=1
Films: https://www.youtube.com/watch?v=0U2uijKb5J8&ab_channel=EastersealsDisabilityFilmChallenge
Sponsored Partnerships: https://thatshandi.co/
168Lyfwtjm06sEdvaCHP
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 (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 best
I 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.org
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 (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.
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Connect with Effie:
https://www.instagram.com/onceuponagene.podcast/
https://twitter.com/OnceUponAGene
https://www.facebook.com/groups/1877643259173346
https://www.linkedin.com/in/effie-parks-741013164/
https://effieparks.com/
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 (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.
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Connect with Jessica:
Instagram: @jayletay and @behinddarkglasses
Twitter: @jayletay
Facebook www.facebook.com/TheWorldofOneRoom and www.facebook.com/AGirlBehindDarkGlasses
Website: www.jaytay.co.uk
Order :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=8-1
Pre-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)
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 (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.
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Larger Than BWS Blog ---> https://www.largerthanbws.com
Social Media ---> @largerthanbws
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 (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.
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 (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!
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Connect with JT:
TEN20words.com
FB and IG @TEN20words
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 (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.
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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 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 womenWhat 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
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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
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 (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 33777
Check Out RARE.**
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 (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. "
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 (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.com
Check out their youtube channel https://m.youtube.com/channel/UCWHlZrG0_YXZX-8IZvZKINg
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 (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.
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Support THAP12 >> https://findyourrare.com/collections/rare-aware-apparel/products/copy-of-greater-than-chronic-pain-t-shirt
Connect with Mariah and Lighting & Love Foundation
Foundation Website: www.lightningandlove.org
GoFundMe: gf.me/u/yqhc2k
Foundation Instagram: https://www.instagram.com/lightningandlove/
Foundation Facebook:https://www.facebook.com/lightningandlove
Introduction Video: https://www.youtube.com/watch?v=5WyVp2dTR9c
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 (https://www.patron.com/findyourrare)
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.
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 (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.com
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 (https://www.patron.com/findyourrare)
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.
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 (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.
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 (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.
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 (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.
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 (https://www.patron.com/findyourrare)