What if the very diagnosis that turned your world upside down could also become your source of empowerment and advocacy? Join us as we welcome Mieko Hester-Perez, a determined mother whose journey into the world of medical cannabis was ignited by her son Joey’s autism diagnosis. Mieko's story is one of unwavering strength, transitioning from a legal secretary to a fierce advocate for families seeking alternative treatments. Her insights are invaluable for any parent navigating the complex maze of medical choices while balancing legal and social implications.

Our conversation ventures into the intricate challenges faced by parents advocating for cannabis therapy for special needs children. With Mieko's firsthand experiences, we explore the delicate balance between embracing unconventional therapies and safeguarding one's family from potential legal issues. Through tales of collaboration with compassionate professionals and tireless efforts to change perceptions, Mieko sheds light on the importance of a supportive network and the legal and medical teams essential in navigating this path safely. Her dedication is a beacon for those feeling isolated on this journey.

The episode also paints a vivid picture of the lifelong bond between Mieko and her late son Joey, whose influence continues to guide her advocacy efforts. Mieko reflects on Joey's enduring legacy, inspiring her work within the cannabis industry and beyond. Through heartfelt stories, we are reminded of the profound impact children can have on their parents' lives, driving them to champion change and foster hope for others. This episode is a testament to the power of love, resilience, and the transformative potential of advocacy.

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Get ready for one of our most meaningful conversations yet. Dr. Chloe sits down with Elizabeth DeLuca—the powerhouse advocate whose late-night PubMed searches, cross-country lab visits, and “help-the-babies” fund-raising campaigns helped push Capsida’s CAP-002 gene-therapy program all the way to FDA clearance. We unpack how this first-in-human trial aims to restore the missing STXBP1 protein, why the same technology could leapfrog into other rare epilepsies, and how a mother’s promise to her daughter is changing the face of science.

Quick links

• Capsida CAP-002 press release – details on the FDA-cleared trial and how it works:
• https://capsida.com/capsida-receives-fda-ind-clearance-for-its-first-in-class-iv-administered-gene-therapy-for-stxbp1-developmental-and-epileptic-encephalopathy/ capsida.com
• STXBP1 Foundation – join the registry, learn about natural-history studies, or donate:
• https://www.stxbp1disorders.org/ STXBP1 Foundation
• Support our mission by shopping the herbal lines that fund this podcast and Remy’s ongoing care:
• • Radical Roots Herbs – whole-plant, spagyric CBD formulas: https://RadicalRootsHerbs.com
• • Noxi Herbs – modular Chinese-herb system for women’s hormones: https://NoxiHerbs.com

Heads-up: We speak candidly about seizures, neuro-degeneration, and child loss. Estimated annual mortality for STXBP1 remains ~3 %—every child is one too many—and that stark reality fuels Elizabeth’s drive and Dr. Chloe’s daily fight for her son, Remy.

Listen, share, and stand with the rare-disease community that defines our world.

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great interview

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.