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Moving Mountains: Parents and Families Driving Research in Rare Disease
Wednesday, August 28, 2019 @ 7:00 PM-8:30 PMFree
5050 Oakland Avenue, Lower Level, St. Louis, MO 63110 United States + Google Map
FREE and OPEN to ALL. Junior Academy members, middle and high school students welcome and encouraged to attend. Registration not required.
Featured Speaker: Stephanie Snow Gebel, founder, Snow Foundation
Stephanie Snow Gebel is the founder of the Snow Foundation, a voice for rare disease that is working towards a cure for Wolfram Syndrome and developing novel therapies for diabetes, vision loss, hearing loss, and neurodegeneration. Hear one family’s story and join a discussion about how you can motivate and engage the research enterprise. Washington University researchers, Fumi Urano, M.D., Ph.D., and Tamara Hershey, Ph.D., who have collaborated closely with the Snow Foundation, will also be present for the discussion.
Over the last eight years the Snow Foundation http://thesnowfoundation.org/ has expanded its mission and now leads a global movement of patients, families, doctors, and researchers who work together to improve the lives of everyone affected by Wolfram Syndrome.
Collectively, rare diseases are not rare: 1 in 17 people will be affected by a rare disease at some point in their life.
—Rare Disease UK
Moving Mountains is an Evenings on Genetics and Genomics Series Community Event of The Academy of Science – St. Louis, Washington University in St. Louis Institute of Clinical and Translational Sciences, the Intellectual and Developmental Disabilities Research Center, Siteman Cancer Center, and the Children’s Discovery Institute of St. Louis Children’s Hospital and Washington University School of Medicine.