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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...
Rare Parenting
Jul 10, 20244 min read
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
Tricia Moore
Jul 8, 20243 min read
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
mejo
Jul 2, 20244 min read
Tethered Spinal Cord Syndrome and Surgery: What Parents Need to Know
A tethered spinal cord (or tethered spinal cord syndrome) is a developmental abnormality that occurs in about 2 of every 1,000 births...
Rare Parenting
Jun 25, 20243 min read
Navigating Rare Disease Challenges: How My Rett Ally Became a Mom's Secret Asset
In the wild ride of parenthood, nothing quite prepares you for the unexpected
twists and turns that life throws your way.
mejo
Jun 24, 20245 min read
Navigating the Complexities of Costello Syndrome
Today, we bring you the heartfelt testament of Amber, a devoted mother and caregiver, whose journey with her daughter Ryiah...
mejo
Jun 17, 20244 min read
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Our favorites
Industry podcasts worth checking out!
Turning advocacy into power for patients and families.
Advocacy is a word we hear often in healthcare. But for many families, advocacy isn’t a choice, it’s survival. For me, it started the day my son Reynolds was born.
From the delivery room to the NICU to countless appointments and hospital stays, advocacy has been woven into every step of our journey.
Ryan Sheedy
1 day ago3 min read
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Real stories from real patients, caregivers and experts.
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