Because We Are Strong

Because We Are Strong

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.

Episodes

May 12, 2021 18 min

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. 


RARE.
WE ARE A BRAND WITH A PURPOSE.

Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We w...

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RARE.
WE ARE A BRAND WITH A PURPOSE.

Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com

Support the show (https://www.patron.com/findyourrare)

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May 5, 2021 33 min

RARE.
WE ARE A BRAND WITH A PURPOSE.

Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com

Support the show (https://www.patron.com/findyourrare)

Share
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RARE.
WE ARE A BRAND WITH A PURPOSE.

Behind every RARE. product is a mission to spread awareness around rare diseases and advocate for those struggling silently with them everyday. We want to make the invisible – visible. And that’s why we created RARE. To Learn More head over to www.findyourrare.com

Support the show (https://www.patron.com/findyourrare)

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?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

RARE.
WE ARE A BRAND WITH A PURPOSE.

Behind every RARE. product i...

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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...

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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...

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April 12, 2021 31 min

 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

RARE.
WE ARE A BRAND WITH A PURPOSE.

Behind every RA...

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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.

...

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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://findyourr...

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#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 ...

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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...

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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...

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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...

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February 23, 2021 26 min

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, an...

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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 pa...

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February 23, 2021 42 min

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 ...

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February 20, 2021 23 min

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...

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February 18, 2021 36 min

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 l...

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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 di...

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