welcome to oneEDSvoice- a positively charged Ehlers Danlos Syndrome community.
- join today!
Founder & President
The Zebra Network
Maryland, United States
A Maryland native, Victoria is an active advocate for individuals with rare, chronic, and invisible illnesses. She suffers with Ehlers-Danlos Syndrome, Hypokalemic Periodic Paralysis, Dysautonomia, Chiari Malformation, Adrenal Insufficiency and a plethora of comorbidities, which she refuses to keep her down.
She is the Founder and President of The Zebra Network, a 501(c)(3) non profit organization that focuses on increasing advocacy, awareness, education, and support for Ehlers-Danlos Syndrome. Victoria is a team leader in lobbying for rare diseases at a state and federal legislative level, vying to increase the quality of life for patients at home and across borders. Her efforts do not stop there! Victoria has worked on several biological projects including sequencing published into the National Center for Biotechnology Information Database, research on Dinitroaniline herbicide resistance, and work with the Genomic Education Partnership.
Victoria currently hold the title of Miss Frostburg 2017 (Miss America Organization) with an educational platform called: “But You Don’t Look Sick” – Making Invisible Illnesses Visible.
Victoria serves as the Community Manager for oneEDSvoice, working to provide support, instigate inspiration, and to spark unity through out the Ehlers-Danlos community. Victoria’s mantra says: “It is not a matter of if we will change the world; it is a matter of when.”
expertly curated content related to this topic
EDS-EHLERS DANLOS UKThis new group is for those with EDS, fr...
Young/adults, Teens with Ehlers DanlosA support group for adolescents, and tee...
My Invisible Cosmic Zebra Has Ehlers-Danlos Syndrome—Now What?If you've ever felt overwhelmed or cluel...
EDS Zebras Australia – Ehlers Danlos Syndrome SupportThis group is for members of Australian ...
Two Brave Flintshire Girls Plan Five-Mile Wheelchair and Walk Trek for CharityTWO brave little girls are putting aside...