We're delighted to share that two powerful stories from our community have been published in Rare Revolution Magazine, in the special Rare Neuromuscular edition, giving voice to the lived experience of neuroacanthocytosis syndromes and helping to raise awareness far beyond our usual circles. 

The articles offer an intimate look at what it means to navigate life with a rare disease, the challenges, the costs, the resilience, and the determination to keep moving forward. 

Alex and Ginger Irvine feature in "From The Ground Up" which explores the journey from first symptoms through diagnosis and beyond, capturing the complexity of building a life while managing a progressive condition. Read full article: https://bit.ly/From-The-Ground-Up

Douglas and Erin Berndsen feature in "At What Cost" which examines the profound impact, emotional, financial, and social, that rare disease has on individuals and families. Read full article: https://bit.ly/Doug-At-What-Cost. 

Both pieces remind us that behind every medical term and research finding are real people with real stories, and that sharing these experiences is a powerful form of advocacy. When our stories appear in publications like Rare Revolution, they reach new audiences, challenge assumptions, and help others feel less alone. 

We encourage anyone in our community who feels inspired to share their experience to consider telling their story. Whether through writing, art, or other creative forms, your voice matters and can make a difference.