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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...
Ryan Sheedy
Jul 11, 20243 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
The Journey of Shannon and Ellie: Embracing Life with Rett Syndrome
Life often takes unexpected turns, leading us down paths we never imagined. For Shannon, the mother of an extraordinary eight-year-old...
mejo
Jun 11, 20244 min read
Camp “Peace of Mind”: Laura and Sam, the Dynamic Duo
In the complexities of caregiving every day presents a unique set of challenges and triumphs.
mejo
May 27, 20243 min read
Best in Class Caregiving with mejo App Founder Ryan Sheedy
Confessions of a Rare Disease Mom - the Podcast.
Podcasts
May 23, 20241 min read
My Rett Ally: Revolutionizing Care Management for Rett Families
On a recent visit to the emergency room, it took just seconds for Samantha Brant to pull up a detailed, up-to-date medication list...
International Rett Syndrome Foundation
May 16, 20244 min read
A Mother and Daughter's Rare Journey: Navigating the Diagnosis Sea
In the vast expanse of the medical world, a journey towards diagnosis can often feel like navigating the open seas without a compass...
mejo
May 16, 20242 min read
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Our favorites
Industry podcasts worth checking out!
What Happens When No One Believes You? A Rare Disease Story of Survival and Self-Advocacy
As my body attempted to right itself, I realized I had to fight for my own medical attention and my own life. I remember having to beg my parents to take me to the ER or to a doctor when I was horribly ill, on the floor, too sick and stiff to push myself up. It took 22 years until the UCLA Neuromuscular Clinic diagnosed a severe variation of stiff-person syndrome (SPS) with the progression of my disease. The neurologist believed I had a form of self-correcting cerebral palsy
Angela Davis
23 hours ago4 min read
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