BONUS: Power of Patients: Stories about taking back the narrative

The Story Collider is delighted to bring you an extra BONUS episode this week -- thanks to the Chan Zuckerberg Initiative, a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges. Both of the stories featured in this episode were recorded a very special show we produced in collaboration with CZI last June in Aspen, about rare medical conditions and the importance of leveraging the power of patients to accelerate research and drive progress.

Part 1: Luke Rosen signs his daughter up for a research study to find out what's causing her seizures and ends up having to fight to find the answers.

Part 2: After stay-at-home mom Tracy Dixon-Salazar's daughter is diagnosed with epilepsy, she enrolls in school in order to decipher what is happening.

Luke Rosen and Sally Jackson founded KIF1A.ORG in 2016 following their daughter Susannah’s KIF1A diagnosis. Luke has extensive experience in rare disease stakeholder engagement, advocacy and research initiatives. Recognized by Global Genes as a 2018 RARE Champion of Hope Honoree, Luke often speaks at international events about innovation in therapeutic development, and about his family’s rare disease journey. Luke’s mission is to accelerate biotech innovation and forge efficient collaborations within the scientific and patient communities, resulting in discovery of treatment for children like Susannah. He relentlessly works to empower families affected by rare genetic diseases to play an active role in discovery, from pre-clinical research through clinical trial readiness and regulatory approval.

Dr. Tracy Dixon-Salazar is a neuroscientist, geneticist, and, patient advocate. Her desire to get her Ph.D. was inspired by her daughter who developed Lennox-Gastaut Syndrome (LGS) at the age of 2. She did her Ph.D. and post-doctoral work at UC, San Diego where she studied the mechanisms of brain development and synaptic plasticity, identified genetic causes of rare disorders in children, and researched precision therapeutics in stem cell and animal models of pediatric disease. During her research tenure, and after 16 years of watching daily, unrelenting seizures in her child, she uncovered the driver of her daughter’s illness and identified a novel precision therapy that improved her child's life. Dr. Dixon-Salazar is an accomplished scientist, proven thought leader, highly sought-after speaker, and staunch advocate for genomic medicine, patient-centric research, and patient engagement. 

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