Story Collider Presents: The Power of Patients
Join us on Thursday, June 20, for this show in partnership with the Chan Zuckerberg Initiative! We’ll present five true, personal stories about rare medical conditions and the importance of leveraging the power of patients to accelerate research and drive progress.
Hosts Erin Barker and Liz Neeley will be joined by Tania Simoncelli, Director of Science Policy at the Chan Zuckerberg Initiative.
Doors open at 6:30pm; show begins at 7:00pm in the Grand Salon. Please arrive early for best seats. Reserve your FREE spot at this event at the link below.
About Chan Zuckerberg Initiative:
Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan Zuckerberg Initiative (CZI) is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. Across three core Initiative focus areas of Science, Education, and Justice & Opportunity, we’re pairing engineering with grant-making, impact investing, and policy and advocacy work to help build an inclusive, just and healthy future for everyone. For more information, please visit www.chanzuckerberg.com.
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.
Dawn J Fraser is a storyteller, producer and a nationally acclaimed communications coach based out of Brooklyn, New York and San Jose, California. She is the Creator and Host of the show ‘Barbershop Stories’, which features storytellers performing true tales in barbershops and salons around NYC, and is the Founder of Fraser’s Edge, LLC, which offers programs for businesses, nonprofits, community organizers, entrepreneurs, and college students to develop their leadership potential through storytelling. As a professional communications coach with more than 10 years of experience, she has worked with notable institutions including Spotify, Chanel, The Peace Corp and Harvard University, as well as notable celebrities including Lori Greiner from the show Shark Tank and the actor/ rapper Common. She is a Lead Instructor with The Moth and The Story Studio and was featured amongst some of the nation’s top innovators and change makers as a speaker at TED@NYC. Dawn has also performed her own stories in shows nationwide including The Moth Mainstage, Story Collider, RISK and The Unchained Tour. She loves being a twin, a Trinidadian, and tweetable @dawnjfraser.
Megan O’Boyle is the the parent of an 18-year-old daughter with Phelan-McDermid Syndrome (PMS). This diagnosis includes autism, intellectual disabilities, epilepsy, ADHD, and other medical conditions. She is the Principal Investigator for the Phelan-McDermid Syndrome Data Network (PMS_DN, PCORnet) and the Phelan-McDermid Syndrome International Registry (PMSIR). Megan is passionate about the value of the patient’s voice in: research, drug development, clinical trial design, development of related legislation, and quality of life decisions. She advocates for data sharing, collaborating with other advocacy groups, sharing resources and streamlining IRB practices and policies.
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.
Erin Barker is the artistic director of The Story Collider, an international storytelling organization that produces a popular podcast and 60 live events every year featuring true, personal stories about science, with the goal of showing that science is a vibrant part of all our lives. As a storyteller, she is the first woman to win The Moth's GrandSLAM storytelling competition twice. She has appeared on PRX's The Moth Radio Hour, and one of her stories was included in The New York Times-bestselling book The Moth: 50 True Stories. She has not been officially sorted, but she considers herself a Gryffindor. Follow her on Twitter @ErinHBarker.