11Jan
Building Endurance in the New Year
Explore practical strategies for building endurance, balancing effort with recovery, and sustaining energy throughout the year.
1. Skill or expertise in a particular activity or field
2. Bravery in battle
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
%
04Dec
Holidaying Your Way
Discover practical tips for reimagining the holidays in a way that brings joy, peace, and connection to your rare family
14Nov
Growing Our Gratitude
Explore the transformative power of gratitude, celebrating those who support us, and discovering how expressing thanks strengthens our relationships!
17Oct
Adapting Halloween Traditions
Check out these tips and ideas to adapt Halloween to make it fun and easy for your child.
About Me
Hi, I’m Nikki,
a rare-disease mom just like you. My son Miles was diagnosed with spinal muscular atrophy (SMA), a rare, neuromuscular disease at the age of eighteen months old. I was thrown into a match I never expected. My inner fighter was awoken. I believe that, like me, you have a brave fighter within you. I want to help you approach the rare-disease journey with bold courage, fearless faith, and unrelenting hope. I want to create a community of brave rare mamas supporting one another.
Let's awaken your inner fighter and rise up!
a rare-disease mom just like you. My son Miles was diagnosed with spinal muscular atrophy (SMA), a rare, neuromuscular disease at the age of eighteen months old. I was thrown into a match I never expected. My inner fighter was awoken. I believe that, like me, you have a brave fighter within you. I want to help you approach the rare-disease journey with bold courage, fearless faith, and unrelenting hope. I want to create a community of brave rare mamas supporting one another.
Let's awaken your inner fighter and rise up!