Because We Are Strong

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
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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.

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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

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

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

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

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

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

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

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

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