About Nikki McIntosh

Nikki McIntosh

Author. Speaker. Podcaster. Advocate. Rare Mama.

Hi, I’m Nikki McIntosh, a rare mama just like you. My son Miles was diagnosed with spinal muscular atrophy (SMA), a rare, neuromuscular disease at the age of eighteen months old. Probably much like you, the role of rare disease mom was something I didn’t see coming.

When you become a mother, there’s something so natural, so innate, so instinctual about protecting your child. All those phrases—mama bear, dragon mother, etc.—hold some truth. We have an animal-like instinct to protect our children. But what happens when we can’t protect them from the grips of a disease, disability, or disorder? What then?

This journey threw me into a jungle I never expected and had never been before. My inner fighter was awoken.

Along my way, I’ve dealt with the gamut of emotions, obstacles, roadblocks, trials and errors, no’s, hurdles, and falls on my face—but sister, I’m still standing. I figured, What’s the use of going through all of this if I can’t use it to help someone else? What if I could prevent you from having to go through some of those things, or at least prepare you for them? Looking back now, I can see there are steps that can be taken to move you from fear to bravery. But in the beginning, it’s hard to know how to get there without having a guide. So it would be my absolute honor to steward you through your journey. Mama, I’ve got so much to tell you.

I believe that like me, you have a fighter within you, though you may not know it yet. Maybe you just received your earth-shattering diagnosis, and maybe you don’t even feel like a whole person, let alone like a brave fighter.

I see you, friend. And I see a fighter within you. Believe me, she’s in you. Let’s create a community of brave rare mamas supporting and encouraging one another.

Let’s awaken your inner fighter and get to rising up!

I AM...

an information seeker
a dream chaser
a perpetual planner
a fear fighter
a joy celebrator
and a hope hailer

I am a lover of God, family, friends—both old and new—travel, pep talks, bacon, old-school hip-hop dance moves, quick wit, and real-talk. My life is a blend of fear and bravery, exhaustion and enthusiasm, reality and hope, heartbreak and joy.

I am a rare mama, just like you.

WHAT I DO

I help empower mothers of children diagnosed with rare diseases. I do this through practical tips, tactical tools, honest stories, how-tos, a bit of cheerleading, and a good kick in the pants when necessary. My writing serves as a catalyst for rare mamas—igniting the fire in their belly, propelling them into action, and marching them forward with hope. I am creating a community where rare moms can encourage and support one another.

WHY I DO IT

I know the soul ache and heartbreak that comes with a child’s rare-disease diagnosis, and I want no other mother to brave this journey alone. My mission is to provide the type of help and hope that I so desperately craved when my son was newly diagnosed. I am compelled to help other mothers feel empowered to support their exceptional children. I want to create a place for rare mamas to call home.

NIKKI'S STORY

Nikki McIntosh is the founder of Rare Mamas®, a platform dedicated to supporting mothers navigating the complex and often isolating world of rare disease parenting. She lives in Southern California with her husband, Tony, and their two sons, Mason and Miles.

Before rare disease became the center of her world, Nikki spent nearly two decades as a Fortune 500 advertising and marketing executive. Ever curious and creatively driven, she trained and performed improv at the world-renowned Second City Training Center in Chicago before moving to Los Angeles, where she became Director of Strategic Planning for a prominent city magazine.

Then, everything changed.

In 2013, at just eighteen months old, Nikki’s youngest son, Miles, was diagnosed with spinal muscular atrophy (SMA)—a rare, degenerative neuromuscular disease. Told there was no treatment, no cure, and that regression was inevitable, Nikki refused to accept a future that offered only decline. She walked away from her career and poured herself into caregiving, advocacy, and an unrelenting search for answers.

That search led her and her husband to a clinical trial for a drug that showed promise. Miles was enrolled. The treatment was effective. That drug—now known as Spinraza—went on to become the first-ever FDA-approved treatment for SMA.

From that breakthrough moment, Nikki immersed herself in the world of rare disease advocacy. She began writing down everything she wished she had known at the beginning of their journey. With a deep desire to empower other rare moms, she launched Rare Mamas®, began speaking, sharing her story, and wrote the book Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease.

Today, through her book, her podcast Rare Mamas Rising, and her speaking, Nikki shines a light on the complexities of rare motherhood and provides support to rare moms. Her voice is one of fierce love, lived experience, and unwavering hope.

Nikki continues to walk this road alongside her son, and alongside the millions of mothers who are parenting children with rare diseases. She has a deep passion for providing strategies, strength, support, and sisterhood to her fellow rare moms.

Empowering rare mamas has become one of the most meaningful callings of her life.

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The Rare Mamas Book Is Here!

Rare Parenting Book Coming Soon—Update: It’s Here!