12Feb
Rare Disease Day 2024
Check out all the great content to shine a light on rare diseases for Rare Disease Day 2024.
1. Skill or expertise in a particular activity or field
2. Bravery in battle
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Rare Diseases
100
million people worldwide with a rare disease
1
million U.S. children with a rare disease
1
%
of patients diagnosed with a rare disease are children
16Jan
Charting the Unknown: Navigating the New Year Amid Uncertainty
Nikki shares practical tips and approaches for navigating a new year amid uncertainties of a rare disease.
11Dec
Advent: A Season of Waiting & Anticipating
Nikki shares musings on the lessons and inspiration she's drawing from the Christmas advent season.
12Sep
A Rare Mama’s Morning Routine
A few thoughts on leveling up our morning game in order to take good care of mama!
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!