Foundation to Eradicate Duchenne
Alexandria, Virginia, United States
Tina & her husband, Dan, live in Maryland along with their 2 children, Sarah & Mark.
Tina currently works as a school nurse for their local school system but also comes with 25+ years of experience working as a physical rehabilitation nurse in subacute settings.
She dedicates most of her time to raising her children and supporting fundraising efforts for the Foundation to Eradicate Duchenne (FED), a small non-profit organization located in Alexandria, Virginia.
The Congressionally Directed Medical Research Programs (CDMRP) Duchenne Muscular Dystrophy Research Program (DMDRP) partners with consumer advocates, aiming at accelerating the transformation of promising therapeutic ideas into clinical application. Tina has served as a consumer advocate for the DMD community. “I was thrilled to contribute to the DMDRP process and to represent the patient community at large.”
Tina has created and administers several small Duchenne focused groups on Facebook that help connect members of the community & engages them in sharing their concerns and experiences related to life affected by Duchenne.
Tina & Dan’s son, Mark, was diagnosed with Duchenne in 2004. He is now 17, doing fairly well, and is currently participating in a clinical trial at Kennedy Krieger Institute in Baltimore, Maryland. He can still walk a very short distance with a walker and aide.
“It’s exciting to be a part of the Duchenne Xchange community and to serve as a Community Engagement Council Member. I highly encourage members of the DMD community to get involved in supporting each other in our social network. We each have something to contribute to ultimately improve lives impacted by Duchenne muscular dystrophy.”