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 t...
Aug 31, 2021•26 min•Season 2Ep. 68
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 ...
Aug 24, 2021•55 min•Season 2Ep. 67
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.Caf...
Aug 03, 2021•21 min•Season 2Ep. 69
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 lov...
Aug 03, 2021•27 min•Season 2Ep. 62
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...
Aug 03, 2021•25 min•Season 2Ep. 67
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 lea...
Aug 03, 2021•40 min•Season 2Ep. 65
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, phi...
Jul 20, 2021•45 min•Season 2Ep. 64
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...
Jul 14, 2021•44 min•Season 2Ep. 63
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...
Jun 30, 2021•38 min•Season 2Ep. 61
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...
Jun 24, 2021•55 min•Season 2Ep. 60
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 s...
Jun 15, 2021•28 min•Season 2Ep. 59
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...
Jun 09, 2021•38 min•Season 2Ep. 58
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 ne...
Jun 02, 2021•36 min•Season 2Ep. 57
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, cha...
May 25, 2021•1 hr•Season 2Ep. 56
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...
May 18, 2021•28 min•Season 2Ep. 55
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/findyourra...
May 13, 2021•19 min•Season 2Ep. 54
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...
May 11, 2021•37 min•Season 2Ep. 53
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...
May 06, 2021•35 min•Season 2Ep. 52
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...
May 04, 2021•37 min•Season 2Ep. 51
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 tempera...
Apr 27, 2021•48 min•Season 2Ep. 49
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 ...
Apr 22, 2021•26 min•Season 2Ep. 48
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...
Apr 20, 2021•34 min•Season 2Ep. 47
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 cont...
Apr 13, 2021•33 min•Season 2Ep. 46
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 OOL...
Mar 30, 2021•47 min•Season 2Ep. 45
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...
Mar 24, 2021•33 min•Season 2Ep. 50
#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 t...
Mar 11, 2021•22 min•Season 2Ep. 42
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 li...
Mar 09, 2021•32 min•Season 2Ep. 41
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 fe...
Mar 04, 2021•43 min•Season 2Ep. 40
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 thos...
Mar 03, 2021•29 min•Season 2Ep. 39
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 aroun...
Feb 23, 2021•42 min•Season 2Ep. 43
