From Isolated Dad to Connected Founder: How Community Shaped My Journey with HIE and Youth Crews
When our daughter was born with HIE (Hypoxic-Ischemic Encephalopathy), it felt like our worldhad shrunk to the size of a hospital room.
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Courageous Parents Network
- Sep 3
- 2 min
In the Room: Let’s Make Caregiving a Bit Easier
This IN THE ROOM event featured 2 Rare Parents who Founded platforms.
Ryan Sheedy
- Jul 11
- 3 min
Our Unexpected Hospital Visit While On Vacation
As a parent of a child with a rare and complex medical condition, every outing can feel like a high-stakes operation...
Rare Parenting
- Jul 10
- 4 min
Does Your Child Need Genetic Testing?
While you might think your child is only at risk of a genetic disease if a certain condition runs in the family...
Tricia Moore
- Jul 8
- 3 min
Shining the Sun on Caregivers
“Reynolds would never have been ready for his upcoming kindergarten year without his time at Sunshine School,” said Reynolds’ father, Ryan
mejo
- Jul 2
- 4 min
The Rare Disease Rollercoaster: ER prepared while on an intensive trip.
Riding the Rare Disease rollercoaster comes with many unexpected twists and turns, sometimes we find ourselves in situations we never imagin
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Brady Crandall
- Sep 5
- 3 min
From Isolated Dad to Connected Founder: How Community Shaped My Journey with HIE and Youth Crews
When our daughter was born with HIE (Hypoxic-Ischemic Encephalopathy), it felt like our worldhad shrunk to the size of a hospital room.
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