In this powerful episode marking Rare Disease Awareness Day, we bring together two remarkable guests whose lives have been profoundly shaped by rare diseases. Erin Paterson, who carries the gene for Huntington's disease and cares for her father with the same condition, and Laura Will, mother to five-year-old Alden who has polymicrogyria, share their unique yet interconnected journeys.The conversation explores the complex reality of being both a caregiver and advocate while maintaining one's own identity. From Laura's innovative concept of "soul to soul communication" with Alden to Erin's approach to involving her daughter in her father's care, these stories highlight how rare diseases, though individually uncommon, create universal experiences of love, resilience, and finding joy in unexpected moments.Erin discusses her journey from hiding her diagnosis to becoming an advocate and voice for the rare disease community. Laura, a former palliative care nurse turned "Dragon Mom," shares insights on finding strength in uncertainty and creating support systems for other parents navigating similar challenges.Key Takeaways:Connection doesn't require identical diagnoses - finding others facing similar challenges is what matters mostLife with rare disease can be both challenging and beautiful simultaneouslySmall achievements others take for granted can become meaningful victories worth celebratingPain can be transformed into purpose through advocacy and support for othersSetting boundaries around caregiving is essential for sustainabilityManaging uncertainty becomes easier with practice and specific strategiesSharing your story, whether through casual conversation or published work, helps build understanding about rare diseaseTo learn more about rare disease awareness and support, check out the anthology Positively Rare, which benefits Global Genes, and Jessica Fein's memoir BreathtakinRate, Review, & Follow on Apple Podcasts "This is my go-to podcast for inspiration and to discover new approaches to embrace the challenges in my life." If that sounds like you, please consider rating and reviewing my show! This helps me reach more people -- just like you -- find strategies and insights to do the things that feel undoable. Click here, scroll to the bottom, tap to rate with five stars, and select “Write a Review.” Then be sure to let me know what you loved most about the episode! Also, if you haven’t done so already, follow the podcast. Follow now! Sign up for my newsletter and learn more about these remarkable stories at www.jessicafeinstories.comOrder Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes Watch Jessica's TedX TalkMusic credit: Limitless by Bells

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