All You Need Is the Next Step: Karen Morici & Emily Durham | The Human Algorithm by trialport

There's no single way to be a rare disease advocate. Karen Morici of CDG CARE and Emily Durham of the Channeling Hope Foundation join The Human Algorithm to share how a parent and a scientist found their way into advocacy, and why every voice counts. Karen was a hairstylist in Chicago with no science background when her son was diagnosed with a congenital disorder of glycosylation (CDG). One phone call from CDG CARE made her feel less alone, and helping other families became her way of healing. Emily always wanted to be a scientist. Research ethics led her to rare disease, and today she helps NALCN families make sense of genetic reports, learn about gene therapy, and get involved in research. In this episode: • Why patient advocacy isn't one-size-fits-all • The gap between what regulators can measure and what actually changes a family's life • Why researchers should share data back with the communities they study • Planning for the unpredictability of rare disease life • Why patients, families, clinicians, researchers and advocates belong in the same room • Why every voice matters when your whole community "can be written on the back of my T-shirt" Chapters 0:00 Intro 1:03 Meet Emily and Karen 2:18 Karen's story: from hairstylist to advocate 5:41 Emily's story: from aspiring scientist to research advocate 8:03 Why community matters 9:10 What we measure vs. what matters to families 13:12 When the plan doesn't work 16:56 Assumptions they've had to unlearn 18:56 What listeners should reconsider 19:44 Bringing the whole community together 20:50 Every voice counts 21:25 "All you need is the next step" 22:22 What's the point of awareness? 23:53 The power of telling your story 24:37 Thank you About The Human Algorithm The Human Algorithm is a podcast from trialport about the people behind rare disease research. Each episode features patient advocates and leaders of rare disease organizations. They talk about living with rare conditions, building community, and making clinical research work for patients and families. About trialport Finding a clinical trial is only the beginning. trialport helps people find the right study, understand what it really means, and decide whether it fits their life, not just their diagnosis. Understanding comes first. Decisions follow. Explore clinical trials: https://app.trialport.com Learn more: https://trialport.com LinkedIn:   / trialport   Instagram:   / mytrialport   TikTok:   / mytrialport   This episode is for educational purposes only and is not medical advice. Guests' views are their own. #RareDisease #PatientAdvocacy #TheHumanAlgorithm