Adrianne Woods

Policy Making & Research

My family and I are from Maryland, United States. Together, my husband and I have two children, Xavier and Quinn. Xavier was born in March 2009 after an uneventful pregnancy. When he was born he immediately began showing signs of seizure activity, he was small for his gestational age, had breathing and eating problems, and had dysmorphic features. He stayed in the hospital for one month before coming home with no diagnosis. Many doctors and tests later, he was diagnosed with Schinzel-Giedion Syndrome (SGS) two years after birth thanks to an astute genetic counselor and genetics specialist. Like many children with SGS, Xavier endured much in his lifetime. Despite these challenges, Xavier lived a full life, going to daycare, school, and many vacations and experiences before passing away at the age of 7 ½ in January 2017.

I have a BS in Social Sciences from the University of Maryland Global Campus and am a Certified Clinical Research Professional through the Society of Clinical Research Associates (SOCRA). I am a research coordinator working with a rare autoimmune disease called scleroderma. Daily, I work with a number of investigator-initiated research studies, sponsor-lead clinical trials, as well as in-person clinical support. I manage a database of over 3,500 scleroderma patients; one of the world’s largest. These professional experiences allow me insight into the world of clinical research along with the unique perspective of having a child with a complex medical condition.

I am honored to be a part of the Schinzel-Giedion Syndrome Foundation because it allows me to continue Xavier’s legacy and to be present in the lives of children and families with SGS. I believe the Schinzel-Giedion Syndrome Foundation will be an invaluable resource to affected families and make significant contributions to the science and understanding of the many facets of Schinzel-Giedion Syndrome.