Item #10 Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease

Description: “Writing Rare Mamas was a labor of love from my experience raising my son, who lives with spinal muscular atrophy, a rare, neuromuscular disease. I wrote everything I wish I'd known when my son was newly diagnosed, and everything I've learned along the way on my over-decade-long journey. My hope is that this book provides strategies, strength, support, and a sense of sisterhood to empower my fellow rare moms” - Nikki McIntosh.

About the Creator: Nikki McIntosh is the founder of Rare Mamas®, a resource and community dedicated to empowering mothers of children with rare diseases, and host of the Rare Mamas Rising podcast. Her mission stems from the profound need she felt after her son was diagnosed with a rare disease, fueling her with a passion and purpose to offer a lifeline of hope and connection to other rare moms. Nikki is a sought-after speaker and a trusted voice in the rare disease space. 

From national conferences and patient advocacy group gatherings to biotech industry meetings and media interviews, Nikki passionately advocates for the rare disease community. She lives in Southern California with her husband Tony and their sons Mason and Miles. 

Socials: Instagram & LinkdedIn
Donated by: Nikki McIntosh