Raising Awareness for individual with little know rare disease with treatment methods but, no cure as of this writing.
166
Aug. 26, 2026
Matters of the Heart with Kathleen Simonetti
Nobody knows exactly why we are born the way we are, sometimes its a case of genetic inheritance, sometimes its cause an accident can happen during our development, and sometimes things just happen the way they do. Four years ago Kathleen Simonetti gave birth to her son Noah but, to everyones surprises he was diagnosed with PPA2 a genetic condition so rare there are only 100 written cases worldwide. On this episode join us for an important conversation about the value of genetic testing, the onl...
Guest: Kathleen Simonetti
153
Oct. 29, 2025
A Frosty Reception with Serenne Vikebø
Asking questions is an important part of learning inside and outside of school. A big part of educating children is encouraging them to do research on topics they wish to learn about but, what about uncomfortable question regarding disabled people? Have you tried to teach your child not to look, approach, or ask questions? On this weeks episode we meet disability advocate Serenne Vikebø from Norway as she shares her journey living with Spinal Muscular Atrophy type 2, her work as a full time Sivi...
Guest: Serenne Vikebø
152
Oct. 22, 2025
Rise of a Tiny Giant with Cassidy Huff
Have you ever felt misunderstood, like you were the only person who could understand what you were going through? This was the challenge for Cassidy Huff as she was born with a rare form of Dwarfism called Conradi-Hünermann Syndrome which affected multiple parts of her body cause her to need surgery every six months from age 1 to 18. On this episode Cassidy shares how she rose above all of these challenges to become a published author at 18, a VoiceOver artist, her dreams of preforming on Broadw...
Guest: Cassidy Huff
139
July 23, 2025
Mini Beats Big Stories with Jay Manuel
They say that big things come in small packages you may know our guest as Mini Producer, or Jay from TLC's Jay and Pamela but, on this week's episode we talk with Jay Manuel as he shares his incredible journey from being born with Osteogenesis Imperfecta Type 3 a form brittle bones disease, to getting into making beats and internet content in 2014, to the creation of the Jay and Pamela show and so much more. Osteogenesis Imperfecta Type 3 might cause Jay's bones to easily fracture but his desire...
Guest: Jay Manuel
132
June 4, 2025
Celebrating until Further Notice with Sunny Brous
ALS or Amyotrophic lateral sclerosis in its first discoveries was thought of as a disease that could only be contracted by people in certain demographics older, white, male, and that patience only live between three to five years between diagnosis and death. Fortunately for the last 10 years Sunny Brous has been proving that statistic incorrect on this episode join us as we discuss everything from The Ice Bucket Challenge, to how our understanding of ALS has changed over the decades, to her work...
Guest: sunny brous
131
May 28, 2025
Fearless Blooming with Mary Tibbetts
Life can surprise us both in terms of what we can and can't control. Mary Tibbetts was diagnosed with MS in 2024 and had to make the difficult choice to sell her successful flower shop. On this episode we discuss how being diagnosed with a disability can help create a better understand of the struggles others face, the importance of looking after your body and mind, and how to live a Fearless life. To follow along with Mary Tibbetts on her journey as an advocate for people with MS check out her ...
Guest: Mary Tibbetts
125
April 16, 2025
Mom Works Hard to Know Best with Bridgett Farmer
All parents want what's best for their children in terms of happiness, education, and experiences. Bridgett Farmer has had to work extra hard on behalf of her daughter Milla who was diagnosed with Autism and a rare genetic disorder called METTL23. On this episode join us on Bridgett's journey from finding families all over the world with people affected by METTL23 to being a mom of three, and the simple joy of her sheep farm and so much more. To follow along of Bridgett's journey or to learn mor...
Guest: Bridgett Farmer
84
June 19, 2024
Be Real Right here Right Now with Jules and Maria Rodriguez
2020 was a difficult year for many people, a time of fear, uncertainty, and lockdown for Jules and Maria Rodriguez 2020 was a difficult year in a very different way as Jules was diagnosed with ALS a terminal condition with a life expectancy between three and five years. Despite these difficult circumstances the love between these two has grown stronger through sharing their journey on The Couples Shift Podcast, raising awareness, and living by the motto Right Here Right Now. This is a story of l...
Guest: Jules & MA
78
May 8, 2024
Running from Regrets with Sophie Grace Homes
Regrets, thinking about all the things that we didn't do when we had the time or energy. We all hope that at the end of our lives we have no regrets for the choices we made now, imagine being told that you wouldn't have much time left to live due a condition you were born with. Sophie Grace Homes was born with Cystic Fibrosis a condition that when she was younger was considered a condition that leads to a shorter lifespan. Determined to make the most of her time Sophie dedicated herself to her l...
Guest: Sophie Grace Holmes
34
May 10, 2023
Baby Steps on the Journey with Paula van Wyk
Cystic Fibrosis a genetic condition that affects For as many as 5,000 Canadians at the time of writing in many ways. For Paula van Wyk she grew up with an older brother who has CF and now she helps look after the next generation of CF warriors in her young son Jack. in today's episode we talk about the importance of doing research on family genetics, food and enzyme monitoring, the salty skin test, planning for the future and so much more. To raise awareness for Cystic Fibrosis you can help b...
Guest: Paula M van Wyk