BLOGS
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...
Mollie Foster
"Wow.. she can sit unaided,...laughs, giggles, baby talks, loves throwing anything..." Mollie Ella Grace Foster, Trisomy 18, 8/12/2004, New Zealand Mollie Ella Grace.. our 7th child, born with full Trisomy 18.. is now 7.6 years old and will turn 8 on the 12th August...
Stacy Lynn VanHerreweghe
Stacy's Story "Stacy loves every minute of her day and comes home laughing, smiling and singing..." Stacy Lynn VanHerreweghe, Rochester, NY, Trisomy 18, 5/21/1981 Update: Stacy is now 34 years old. She is still enjoying life to the fullest. She...
Ethical Rounds: An Infant with T18 & VSD
PROFESSIONAL VIEWPOINT: JOURNAL CLUB Reprinted from the SOFT Times, May/Jun/Jul 2011. Janvier A, Okah F, Farlow B, Lantos JD. 2011. Ethical Rounds: An infant with trisomy 18 and a ventricular septal defect. Pediatrics 127:754-759. When I received my personal copy...
Managing Grief, Stress and Loss for Special Needs Parents
Workshop Presentation From the 2011 SOFT Conference in Chicago Introduction: My name is Maraline Mattke and I am a Licensed Clinical Social Worker. That means I have a Masters Degree and special training to help people deal with their individual situations and life...
Palliative and Hospice Care
A brief description of Pediatric Palliative Care, Perinatal Palliative Care and Pediatric Hospice Care Pediatric Palliative Care Palliative Care is often recommended for newborns with trisomy 18 or 13 who are able to be discharged from the hospital to home....
Medicaid Waiver, SCHIP, SSI
Medicaid Waiver, SCHIP, SSI, Katie Beckett, TEFRA, etc. Medicaid Waivers Waivers are programs that states can use to test new or existing ways to deliver and pay for health care services in Medicaid and the State Children’s Health Insurance Program (SCHIP). These...
What Does “Rare” Disorder Mean?
PROFESSIONAL VIEWPOINT: Journal Club All of us at SOFT and the trisomy 18 community worldwide were saddened by the news of the two hospitalizations of Bella Santorum, daughter of Republican Presidential candidate, Rick Santorum, that appeared in various media sources...
In Stitches – Knitting Club
In Stitches Workshop from the 2010 SOFT Conference in Sioux Falls An early workshop in at the 2010 conference in Sioux Falls was for knitters. Not completely according to plan, there were more wanting to learn to knit, than those in need of a new project. Those who...
