In this thought-provoking episode of our podcast, we have the privilege of speaking with Makenzie Cabrera, a remarkable mother who shares her journey of raising a child with Familial Cold Autoinflammatory Syndrome (FCAS), a rare and debilitating genetic d

Jonathan sits down with Becky, a remarkable individual living with Koolen de Vries, a rare genetic disorder. In this heartfelt episode, she shares her personal journey and opens up about her children's experiences with the disease. Tune in to gain ins

This week, Jonathan speaks with Lauren, the Mom of Finn, who was born with Mic Cap; Microcephaly-capillary malformation (MIC-CAP) syndrome is an autosomal recessive disorder caused by biallelic STAMBP pathogenic variants. They discuss their journey to Fin

In this episode, Jonathan sits down with Fran, a millennial caregiver “carennial” to her late father. After his passing, she has made it her purpose to educate and advocate for young caregivers caring for those with Alzheimer’s and Dementia. For resourc

In this episode, Jonathan sits down with Patricia, a mom and a caregiver of a child with Pyruvate Dehydrogenase Complex Deficiency. Wyatt is a 3-year-old with lots of energy, passion, and setbacks that he faces with a positive attitude. She discusses her

On the Season 3 premiere, Jonathan talks with Steve, a podcast host of Life with Jamie and More, a father, a caregiver, and so much more.  In this episode, they discuss the roles of being a caretaker and a father to his son Jamie born with Down Syndr

On the season finale of Season 2, Jonathan sits down with Tiffany Goodchild, Karter’s Mom. Karter has spastic quadriplegia cerebral palsy, microcephaly (secondary to the HIE injury), a g-tube, is regarded as non-mobile/non-verbal, and seizures. Karter is

On today’s episode, Jonathan sits down with Kareem and Sarita Edwards. They are parents to Elijah who has Trisomy 18, otherwise known as Edwards Syndrome.    They discuss their non-profit organization “The E. WE Foundation”, named after Eli

On today’s episode, Jonathan sits down with Devin and Mike Dwyer.  They are parents to Jack who has SPG50. They discuss their journey with Jack and his rare disease. SPG50 is degenerative, both physically and mentally, and that spasticity progresses

In today’s episode, Jonathan sits down with Nikki McIntosh, the founder of "Rare Mamas". She discusses her journey with her son Miles and his rare disease, Spinal Muscular Atrophy (SMA). Nikki has immersed herself in the world of SMA, rare diseases, and d