Today on the podcast we are joined by mother and advocate, Elisabeth Parker. Elisabeth lives with her family in Portland as a Noonan Syndrome Advocate, she is a yoga instructor, and also the founder of @Move2Advocate that provides Rare Disease Mamas, Advocates and Friends with inspiration, accountability, and empowerment for self-care through all things movement.
Read MoreBen and Laura are the founders of Jonas Paul Eyewear and join us for a conversation about raising their son Jonas who was born blind, a result of a rare eye condition called Peters anomaly. We discuss life before and after diagnosis, how community changes with family changes, and they offer some advice if you’re thinking about starting an organization or a company in response to your child’s diagnosis. In addition, Jonas himself takes a moment to join us on the show and you don’t want to miss what he has to share with us!
Read More
