Raising Rare
Raising Rare
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S7E2 Jessica Patay - Offering a Lifeline
“I didn’t realize how alone I was.”For Prader-Willi Syndrome (PWS) awareness month, we are sharing a discussion with Jessica Patay, founder of We Are Braver Together. PWS requires 24/7 vigilance over…
S7E1 100th EPISODE A New Season, A New Era
100 EPISODES!!!It is hard to believe that over 6 years ago, we started Raising Rare as an experiment. How would people react to following the life of a young family affected by an ultra-rare disease?…
S6E11 Leaving a Legacy - Sanath Kumar Ramesh
Almost 7 years ago, Sanath Kumar Ramesh found out his son had an ultra-rare mutation.This began a journey that would force him to grow into a man he never imagined. Part of his journey was this…
S6E10 Rare Men, Rare Wellness – David Hogan
How do you tell whether a zebra is male or female?The male doesn’t’ talk about their #raredisease.This can be hard on them. There have been very few places for them to gather to take care of their…
S6E9 Plans Change. Dreams Shift. - Mariah Swanson
“This journey has changed our lives, has reshaped my identity. Plans change, dreams shift. I've had to learn to become more than just a mom.”Mariah only started this journey earlier this year. She…
S6E8 Rare Mamas: THE Field Guide for Navigating Your Child’s Rare Disease
Five years ago, we first spoke with Nikki McIntosh. In this episode, Nikki returns to share her journey as a mother of a child with spinal muscular atrophy (SMA) and the profound impact of clinical…
S6E7 Shaped by the Journey – Claudia Parker
The stories of rare kids powerfully shape the stories of the parents who are raising them. In this episode, Claudia Parker discusses how her daughter, who has FOXP1 syndrome, has brought so many…
S6E6 Missing Pieces in the Pain Management Puzzle
“Raghav’s expression for discomfort is laughter, counterintuitively. We call it his cranky laughter.” Sanath RameshImagine not being able to tell the people around that you are in pain. Or more…
S6E5 Big Sister at Ronald McDonald House
This season, you probably have heard Everleigh’s voice a little more often. It was this story that gave us the idea. In this short episode, we hear about one of the unexpected struggles that…
S6E4 This is a Love Story - Jessica Fein
“I am afraid there is something wrong with her brain”A mother’s intuition is often the first telltale sign of a rare disease. With the deep bonds that are built during pregnancy, there seems to be a…
S6E3 One Christmas Without Knowing
“I am so thankful that we had that one Christmas without knowing…” Jill Wood.When Jill’s son Jonah was born, there was no sign that he was anything but adorable. However, at his 1-year visit, his…
S6E2 Relentless Demands, Relentless Advocacy
Raising a child with a rare and complex disease is a full-time job… or more. Constant advocacy. Almost every interaction regarding the child requires additional effort to bring people or the system…
S6E1 It Has Been a Minute... Or Two
Flexibility is critical when talking about raising a child with a rare disease.It has been a long time friends.The Raising Rare Team has been dealing with a number of challenges since Season 5 ended.…
S5E17 The Importance and Power of Taking A Break (Season Finale)
Season 5 has been fantastic. We feel so thankful to our guests for sharing their stories. Which emotion-character from “Inside Out” are you? Sanath and Brittany reveal the characters they relate…
S5E16 Complicated
As a new parent, you feel like “oh, my gosh, I must be going crazy” or……maybe the doctors don’t even understand what is going on.New parents do not know what to expect. There is a lot of self-doubt…
S5E15 Wes Michael: Dedicated to Amplifying the Rare Patient Voice
We often hear the stories of patients and caregivers. Rare Patient Voice is well known for connecting family's stories with the researchers who need to hear them. The founder, Wes Michael, sat down…
S5E14 Coming Together for a Cure - Blake Benton Part 2
In Part 1, we heard about the bold and courageous approach that Ryan Benton's family took to treat his Duchenne Muscular Dystrophy. After seeing the success of the stem cell therapy, Blake and Ryan…
S5E13 A Bold and Courageous Approach - Coming Together For A Cure
Blake Benton’s earliest memories were his brother declining due to Duchenne Muscular Dystrophy.About 10 years later, his parents and brother made a bold move. They went to Costa Rica to get an…
S5E12 Find Your Real Friends in Your Rare Disease Community
Type 1 Diabetes (T1D) is not considered a rare disease according to the numbers. The T1D community is quite large and includes people of all ages, races, geography, and conditions. However, many of…
S5E11 This Is Who These Rare Kiddos Are
Beyond the Diagnosis is more than a traveling art exhibit. It is a movement to humanize the children who happen to have a rare disease. So much of the work around rare diseases is logical,…
Frequently Asked Questions
Raising Rare has published 102 episodes since February 2020, covering topics in Health & Fitness, Kids & Family.
Raising Rare is currently highly active with new episodes monthly. Average episode length is 31m.
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