BLOGS
Lives Worth Living
Fallible Truths: Presentation made by Dr. McCaffrey View & Download this presentation. Fallible TruthsDownload
Diana Victoria Rodriguez
Diana Victoria’s Story “These babies are very special, and we are very special for having them.” Diana Victoria Rodriguez, 07/21/2007 to 08/07/2007, Trisomy 13, Plantation, FL Hello, my name is Nora-Lee Rodriguez, my husband Nicolas and I are the proud parents of...
2015 ACMG Meeting
SOFT was among the 150 exhibits at the American Clinical Genetics Meeting sponsored by the American College of Medical Genetics and Genomes in Salt Lake City, Utah March 25- 27th, 2015. Over 2,200 professionals attended the meeting, which consisted of over 40...
What Shall We Do Now?
For parents of infants newly diagnosed with Trisomy 18 or 13 The Need for Information at Diagnosis For parents facing decision-making following a prenatal diagnosis or diagnosis following the birth of a son or daughter with trisomy 18 or trisomy 13, information is...
2014 ACMG MEETING
Mark, Faye and Morghan (trisomy 18) represented SOFT at the 2014 American College of Medical Genetics and Genomics (ACMG) in Nashville, TN. “I was told by several people we had the best booth because we had MORGHAN. A picture may be worth a thousand...
TRIS Project – Trisomy 18
Giving a Face to Trisomy 18: Debbie Elaborates on this Rare Condition Ava, Akaiya, and Annabelle, three little girls with full trisomy 18. The terms “incompatible with life” and “lethal anomaly” are often used to describe trisomy 18 (t18). Would-be parents are...
TRIS Project – Trisomy 13
What is Trisomy 13? It is difficult to find the accurate prevalence data about trisomy 13 (t13). Some studies look to hospital registries while others focus on infants born in a specific state or country. Numbers are extrapolated and figures are shared. The common...
TRIS – Trisomy 9
What is Trisomy 9? When I started on my trisomy journey, my reference point was children with trisomy 18. In the 1990’s, I found very little information about medical conditions, developmental needs and pretty much anything about growth and potential. Fast forward to...
TRIS Project – Rare, Rare Disorder
What is a “Rare Rare” Genetic Condition? It is interesting to note the prevalence of conditions such as trisomy 18, 13 and 9 vary between one in 5000 to 9000. This translates to a low incidence and, oftentimes, corresponding negative views on medical interventions and...
TRIS Project
Trisomy 13, Trisomy 18 and related disorders ~ The TRIS Project ~ Tracking Rare Incidence Syndromes The TRIS project provides a means to change perceptions about children with rare trisomy conditions. Through data from TRIS Surveys, new information is available about...
