We are Mary Beth and Victoria, a mother-daughter team taking on life together one adventure at a time. 

Both Mary Beth (the mom) and Victoria (the daughter) have Ehlers-Danlos Syndrome, a genetic connective tissue disorder. Victoria has undergone 14 brain and spinal neurosurgeries over the past 7 years and has a series of other rare conditions which makes life...fun.

As a competitive gymnast and soccer and lacrosse athlete during her youth, Victoria began having joint dislocations, extreme pain, and neurological issues. Diagnosed during college with a Chiari malformation and spinal instability, the surgeries have sought to stabilize her head and spine. 

Victoria started a non-profit organization, The Zebra Network, at age 22 to provide awareness, education, and on-the-ground support to patients. She also got involved in the Miss America scholarship organization to spread awareness about invisible illnesses, and shared her monologue, “But You Don’t Look Sick – Making Invisible Illnesses Visible” to raise awareness for the many invisible illnesses and disabilities that people face every day.

From the beginning, Victoria openly shared her daily battles with Ehlers-Danlos Syndrome and her other conditions with the hope that others could relate to the good, the bad, and the ugly. Victoria’s story has been shared across the United States and in over 30 countries and translated into 10 languages. Having to withdraw from college during her surgical journey, Victoria worked hard to finish college while recovering from surgeries, and after lobbying on Capitol Hill for rare disease awareness, she now works as a Director of Operations on Capitol Hill. Over the years, Victoria has found serenity in art and joy in sharing this passion with loved ones and the community. 

Mary Beth has worked in higher education for over 20 years and is dedicated to providing quality online learning. Most importantly, Mary Beth is dedicated to supporting Victoria’s medical journey.