29Oct
The Rhythms of Rising and Recovering
Exploring the Rhythms of Effort and Recovery — how to build moments of rest right into the cracks of our real lives.
1. Having the knowledge, confidence, means, or ability to do things
2. Making (someone) stronger and more confident
Rare Diseases
0
+
million people worldwide with a rare disease
100
million U.S. children with a rare disease
1
of patients diagnosed with a rare disease are children
1
%
23Sep
The Rare Mamas Book Is Here!
Discover how the new book Rare Mamas offers support, strategies, and sisterhood for rare parenting and rare disease moms.
23Jul
Rare Parenting Book Coming Soon—Update: It’s Here!
A new book for rare disease moms is coming. Learn why Nikki wrote Rare Mamas and how it offers strategies, strength, support and sisterhood for rare parenting.
07May
Mother’s Day: Holding Onto Our Identity
This Mother’s Day, discover how we can reclaim our identity, nurture passions, and embrace who we're becoming—beyond caregiving.
About Me
Hi, I’m Nikki,
a rare disease mom just like you.
When my son Miles was diagnosed with spinal muscular atrophy (SMA), a rare neuromuscular disorder, at just eighteen months old, everything changed. I was suddenly thrust into the world of rare disease parenting, caregiving, and advocacy. That’s why I created Rare Mamas®—a supportive space for rare moms and rare mothers raising children with rare diseases and rare disorders. Whether you’re newly diagnosed or years into the journey, I want to help you navigate this path with bold courage, fearless faith, and unrelenting hope.
Let’s awaken the inner fighter within, build community, and rise together!
a rare disease mom just like you.
When my son Miles was diagnosed with spinal muscular atrophy (SMA), a rare neuromuscular disorder, at just eighteen months old, everything changed. I was suddenly thrust into the world of rare disease parenting, caregiving, and advocacy. That’s why I created Rare Mamas®—a supportive space for rare moms and rare mothers raising children with rare diseases and rare disorders. Whether you’re newly diagnosed or years into the journey, I want to help you navigate this path with bold courage, fearless faith, and unrelenting hope.
Let’s awaken the inner fighter within, build community, and rise together!